Bioethics

FOURTH EDITION Revised and Updated

Thomas A. Shannon and Nicholas J. Kockler

PART I: GENERAL ISSUES

1. Introduction: What Is Bioethics? ……………………………………….3

2. Technology, Nature, and Responsibility …………………………..13

3. Ethical Issues and Theories ……………………………………………..28

4. Common Terms Used in Bioethics ………………………………….39

PART II: ISSUES EARLY IN LIFE

5. Abortion ………………………………………………………………………..67

6. Reproductive Technologies ……………………………………………..89

7. Early Diagnosis of Genetic Anomalies …………………………… 107

PART III: ISSUES AT THE END OF LIFE

8. Definitions of Death ……………………………………………………. 129

9. Forgoing and Withdrawing Treatment ………………………….. 144

10. Euthanasia …………………………………………………………………..168

11. Physician-Assisted Suicide ……………………………………………. 184

PART IV: ISSUES IN BIOTECHNOLOGY

12. Genetic Engineering: Nonhuman Organisms …………………201

13. Genetic Engineering: Human Beings ……………………………..231

14. Cell-Based Biotechnologies …………………………………………..250

PART V. OTHER SPECIFIC PROBLEMS

15. Organ and Tissue Transplantation ………………………………..273

16. Research on Human Subjects ………………………………………..290

17. A Whole Earth Ethic …………………………………………………….302

WHAT IS BIOETHICS?

Today the word bioethics is commonplace. Several newsmagazines, television shows, and Web sites have devoted special editions to topics such as stem cell technology, cloning, organ transplantation, in vitro fertilization, and gene therapy. Almost daily, media attention focuses on some particular problem, application, or breakthrough in science that inevitably raises as many problems as it solves.

We have become so used to these discussions and events that we forget that it was only forty years ago that the institute of Society, Ethics and the Life Sciences-as the Hastings Center was known then- was founded.’ In 1965, few knew of the institute, and fewer still understood what its members were talking about. But the role and value of this institute, and others that were to follow in its footsteps, were soon discovered as the major questions of abortion, population control, the allocation of resources, genetic engineering, behavior modification, and all the problems associated with dying began to press in upon us. Discoveries and applications began to outpace our ability to reflect on them, and everyone was reeling from the biological revolution.

We have seen several presidential commissions and advisory boards, an encyclopedia and its revised editions/ numerous journals3 and books,’ several societies, associations, and centers,’ and innumerable conferences all devoted to various problems in bioethics. Courses have spread throughout undergraduate and graduate schools; even graduate programs in bioethics now exist. Bioethicists have appeared as experts in court trials, and journalists frequently cite them in media reports about various dilemmas in health care and the life sciences. Institutional review boards, which examine the ethical dimensions of human research, are present almost everywhere.’ Many hospitals now have in-house ethicists and/or ethics committees to help evaluate a variety of ethical dilemmas that occur in the routine provision of health care.’

Few would have thought that such events could have happened when the first few tentative steps in the ethical examination of issues in health care were being taken in the 1960s. From these early days, commentators generated a wealth of scholarship; and although many problems seem as intractable as they did when first considered, the field has advanced considerably, and we are the beneficiaries of such scholarship.

A number of names have come into use to describe different areas of study in this field. One is

medical ethics. This looks primarily to the study of ethics within the discipline of medicine and the medical profession. Another term is health care ethics, which examines all the various issues in health care, including medical and nursing ethics, as well as public policy and institutional issues. The term organizational ethics sometimes designates ethical discourse concerning institutional issues. When considering the ethics of caring for patients at the bedside, the terms clinical ethics or clinical bioethics are used. We will use the term bioethics, which is a more inclusive term.

Since bioethics examines the ethical issues at both the heart and the cutting edge of technology in health care and the life sciences, the area covered is necessarily broad. This is what makes bioethics as a field of study complex but also exciting. There is a need for many specialties and disciplines because no one field can claim the territory of life. In addition to the potential benefits and harms, we have learned that medical technologies have economic consequences, which raise questions of allocation. Reality-which is itself interdisciplinary-has taught us to be interdisciplinary in our thinking. Similarly, bioethics is teaching us the necessity of genuine interdisciplinary thinking and working. Traditional disciplines that participated in one way or another in the field of bioethics include, for example, theology, philosophy, medicine, law, and biology. One might say that bioethics is a multidisciplinary field carried out through interdisciplinary discourse.

BIOETHICS

When we focus on the first part of the word bioethics- are thrust into the exciting, complex, and often troublesome world of medicine and the life sciences, which includes neuroscience, genetics, and molecular biology. The prefix biocomes from the Greek word for life (bios). Several questions emerge when one thinks about applications of both biotechnology and nanotechnology. This aspect of our topic requires that we study these fields to understand the biological revolution that is occurring around us. While we need be neither experts nor even competent amateurs, we do need to be informed citizens if for no other reason than the developments in these fields have a profound impact on our lives and our society. Thus paying attention to developments in these fields is a critical first step in examining ethical dilemmas in bioethics.

BIOETHICS

The other part of the word-“ethics”-is equally important, for the developments we discuss raise serious and profound dilemmas that challenge our value system as well as the culture supporting those values. The root ethics comes from the Greek word ethike meaning the science of morals or the study of habits.

Ethics, of course, has a problematic reputation. Many regard ethics as the great naysayer and dismiss it out of hand. Others reduce ethical arguments to opinion or taste and refuse to face arguments and conflicts. Still others use carefully developed principles and/or methodologies to consider various values and to tease out hidden conflicts and complex relationships.

Let us present an overview of two methods of ethical decision making that are frequently used in bioethics. The first is a kind of ethics known as deontological ethics. The Greek word deon means duty, obligation, or principle. Deontological ethics is a method of decision making that begins by asking, “What are my duties?” or “What are my obligations?” The correct ethical course is to follow

one’s duties-regardless of where they lead one. One may refer to this as the “Damn the torpedoes, full steam ahead” school of ethics. For once duties or obligations are established, the appropriate actions are clear and must be undertaken regardless of circumstances or outcomes.

A very common example of deontological ethics is the Ten Commandments of the Judeo-Christian religious tradition. The Ten Commandments are basically a set of moral duties that tell what to do or not to do. Biblical writers present them as clear and certain moral guides that mean what they say and say what they mean. They are, after all, the Ten Commandments, not the Ten Suggestions.

The second is a kind of ethics known as teleological ethics. The Greek word telos means end or goal. Thus, in teleological ethics, one’s moral obligations are established, not by an evaluation of obligations, but by an examination of consequences or outcomes of various actions. Thus one name for this kind of ethical theory is consequentialism. This method attempts to predict what will happen if one acts in various ways and to compare these various outcomes against one another. This outcomes-based evaluative process determines what is moral or the right act.

Situation ethics is probably one of the better known of the many variants of consequentialism. Popularized in the mid1960s by Joseph Fletcher, situation ethics requires that we attend seriously to the implications of actualizing our ethical beliefs. Thus situation ethics would argue that it is not enough to do good; one must also know which of the many possible goods is better. Therefore, the basis for right action is found in the particular characteristics of the situation.

Although each of these has the strengths of the ideas on which the methods are based, they both suffer from a limitation: they each have tunnel vision when evaluating means or ends. Deontological ethics typically neglects the outcome of an act and is inattentive to substantive differences in the outcome of our actions or the way an unnuanced act can affect individuals or society. Additionally, deontological ethics typically does not take into account the situation or circumstances in which individuals find themselves. Similarly, in its zeal to attend to the outcomes of our actions, consequentialism neglects to develop a way to evaluate the various outcomes or to compare them against one another. That is, situation ethics says to do that act which produces the best or better outcome. But it has no built-in standard by which to judge or to discriminate between outcomes. Perhaps a viable ethical strategy would be to use the two theories as a dialectical way of evaluating both means and ends. In this way, the theories can be mutually corrective rather than mutually exclusive by being attentive both to our obligations and to various outcomes.

We will explore ethical theories in more detail in chapter 3.

THE ISSUES

One can find the topics we will discuss in this book in the table of contents. As an introduction, the book will present an overview of the issues in the major problem areas of bioethics: abortion, reproductive technology, early (genetic) diagnoses, death and dying, forgoing or withdrawing treatment, euthanasia, physician-assisted suicide, genetic engineering-of plants, animals, and human beings-cell-based biotechnologies (e.g., stem cell technology, cloning, and chimera research), organ transplantation, research on human subjects, and environmental issues.

As you proceed into the book, you will notice that certain questions continue to reappear, certain terms continue to make their significance felt. Certain questions and solutions to problems will raise broader social policy questions. Specific practices call into question fundamental relationships and values. This introduction to bioethics will not examine all these topics or subjects but will frame various questions so that you will have a way of orienting yourself to these broader questions of social policy. For an in-depth examination of these and other topics, we suggest books at the end of each chapter that are relevant for that particular topic.

You will also find any number of Web sites on the Internet relating to bioethics. In November 2007, we ran a Google Web search on “bioethics,” which returned about 4,610,000 hits. Of course, not all of these hits may be trustworthy, good, or reliable. There are several research tools available on the Internet and through libraries. The National Reference Center for Bioethics Literature (NRCBL) at Georgetown University offers a bibliographic search service. Users submit information about the particular topic and project on which they are working, and the NRCBL will return a bibliography of bioethics resources (articles, books, etc.) fulfilling the search criteria. The Web portal for this service is: http://bioethics.georgetown.edu. As the Internet evolves, scholars, students, and others in the field of bioethics will begin to appreciate and distinguish the good resources on the Web from the problematic ones.

To return to our first question-What is bioethics?-let us consider a few definitions. One may define bioethics generally as follows: the systematic exercise, study, and methodology of responsible agents and actions in the life sciences (e.g., biology) and healing arts (e.g., medicine). The Oxford English Dictionary defines bioethics as, “The discipline dealing with ethical questions that arise as a result of advances in medicine and biology.”‘ A biologist by the name of Van Rensselaer Potter first used the term to refer “to a new field devoted to human survival and an improved quality of life, not necessarily or particularly medical in character.”‘ In 1977, the philosopher Samuel Gorovitz defined bioethics as the “critical examination of the moral dimensions of decision-making in health-related contexts and in contexts involving the biological sciences.”” This definition is still a good one for it highlights the interdisciplinary and social dimensions of bioethics. It points us in the right direction as we enter the fascinating, but complex world of bioethics.

DISCUSSION QUESTIONS

1. Why is it necessary to have basic knowledge of both scientific and ethical issues in considering the problems encountered in bioethics?

2. What major bioethical problems have been in the media recently? What are some of their implications?

3. Why must one also consider the social or policy implications of problems in bioethics?

NOTES

1. Albert R. Jonsen, The Birth of Bioethics (New York: Oxford University Press, 1998), 20-22.

2. The Encyclopedia of Bioethics is in its third edition. See Stephen G. Post, ed., Encyclopedia of

Bioethics, vols. 1-5, 3rd ed. (New York: Macmillan Reference USA, 2004).

3. Several key bioethics journals include, but are not limited to, the American Journal of Bioethics, Journal of Clinical Ethics, Hastings Center Report, Bioethics, the Kennedy Institute of Ethics journal, and the National Catholic Bioethics Quarterly.

4. See Jonsen, Birth of Bioethics, and Jennifer K. Walter and Eran P. Klein, eds., The Story of Bioethics: From Seminal Works to Contemporary Explorations (Washington, DC: Georgetown University Press, 2003).

5. For example, the American Society for Bioethics and Humanities, the American Society of Law, Medicine, and Ethics, the Kennedy Institute of Ethics, and the Hastings Center.

6. See the compliance rules of the Department of Health and Human Services, Protection of Human Subjects, 45 CFR 46 (2005), §46.112.

7. See JACHO standards for accreditation: Joint Commission on Accreditation of Healthcare Organizations, Comprehensive Accreditation Manual for Hospitals (Oakbrook Terrace, IL: Joint Commission on Accreditation of Healthcare Organizations, 1999).

8. Though many dispute whether bioethics should be understood as a discipline in the narrow sense. See Jonsen, Birth of Bioethics, 325-51. See also Daniel Callahan, “Bioethics,” in Encyclopedia of Bioethics, 1:278-87; and idem, “Bioethics as a Discipline,” The Hastings Center Studies 1, no. 1 (1973): 66-73.

9. Callahan, “Bioethics,” 280. See also Warren T. Reich, “How Bioethics Got Its Name,” Hastings Center Report 23, no. 6 (November 1993): S6.

10. Samuel Gorovitz, “Bioethics and Social Responsibility,” The Monist 60 (January 1977): 3.

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INTRODUCTION

Humans have always seemed to find ways of intervening in nature. The ability to make a fire and the invention of the wheel had profound impacts on the development of human society. The domestication of plants and animals allowed humans to live in ways unthought of before. The rise of modern science and the Industrial Revolution stand as markers of yet another major change in our way of life.

Our current technological revolution presents further opportunities for intervening in life on both the micro and macro levels. The technologies surrounding conception and birth, such as in vitro fertilization and amniocentesis, help determine when we will be born and what some of our qualities may (or may not) be. Developments in genetics led to the production of new grains that produce more bushels per acre.’ An oil-eating bacterium has been manufactured to help clean up oil spills.’ Although a totally implantable artificial heart is not yet a reality, various assist devices are available to serve as a transition to technology; in fact, some researchers are developing technology that makes threedimensional tissues using inkjet technology.’ In terms of regenerative medicine, the hope for these scientists is to one day use the technology to create fully functional replacement organs or tissues. The sequencing of the human genome by the Human Genome Project and Celera Genomics has given us the map and sequence of our genetic structure. Current research is aimed at deciphering the functions of our genes for new approaches to treating genetic diseases and preventing others.

Technology touches virtually every part of our lives; but the moral record of technology is certainly a mixed one. Clearly technology has brought benefits. Computers have given us incredible capacities for calculating and information processing. The vast amounts of information about individuals collected and stored through technology raise serious issues of privacy and confidentiality. Medical technologies provide improved diagnostic capacities, but frequently we can do little or nothing about the disease diagnosed. Other technologies have fairly negative consequences. Nuclear weapons brought us to the brink of annihilation. To protect national interests, governments continue to develop more sophisticated instruments of “interrogation.” The impact of yet other technologies is mixed. Nuclear power stations provide necessary energy but problems of waste disposal have yet to be fully resolved. Birth technologies provide children but do not cure infertility. In addition, many wonder whether such technologies reduce children to commodities. Developments in biotechnology promise new cures or the end of global hunger, yet they carry threats to social justice, biodiversity, and ecological harmony.

Whatever one’s judgment about a particular technology, technology is here to stay and will continue to have far-reaching effects on our lives.

CHARACTERISTICS OF TECHNOLOGY

While specific technologies vary, technology itself has several common themes. Let us indicate some of these by following ideas proposed by Norman Faramelli in his book Technethics.4 Here, we will introduce six characteristic themes of technology.

The Empirical or Pragmatic Spirit

This is certainly close to the American spirit. We want to get the job done and get it done quickly. The issue is results, preferably results that we can measure.

Functionalism

Functionalism follows from the pragmatic bent of our culture. The issue is design and performance. We are frequently more concerned about how something will work than why we should do it.

Preoccupation with Means, Not Ends

We know that it is often easier to figure out how to solve a particular problem than to agree on which problem ought to be solved. The question of ends requires explicit value judgments for solutions. We often hope that we can finesse that difficult debate by focusing on the means-and by pretending that the means debate involves no value or ethical judgments.

Preference for Quantity over Quality

An old song says that if you can’t be with the one you love, then love the one you’re with. This attitude reflects-among other things-a preference for that which is at hand, for what is available, rather than that which is better. Of course, quantitative measurements are easier to do and the phrase the bottom line has a nice objective, realistic ring to it. Yet for all the material goods available to us, we seem too unsatisfied, unfulfilled. Plus, knowledge of the bottom line may not give us the important information we want and need for critical decision making.

Efficiency and Profit

The concept of standardization led to the development of interchangeable parts, which led to mass production, which led to fewer skilled laborers being needed, which led to lower wages, which led to higher profits. Now robots, which are directed by computers, perform much of this process-hence, the emergence of automation in manufacturing. Pragmatism, functionalism, and preoccupation with means and quantity all join here to promote efficiency in the service of higher profits.

Manipulation

Concern for efficiency and quantity leads to a desire to exercise greater rational control over all phases of life. For only in this way can one increase productivity at a cost-effective level.

Manipulation to achieve rational control is one thread in the manufacturing process-though the final word on the use of robots is yet to be heard. But such manipulation may be quite another thing if we begin more intensive selection of characteristics of our offspring through advanced diagnostic technologies and genetic interventions.

WHAT IS TECHNOLOGY?

Having seen some of the characteristics of technology, let’s now look to defining it. An obvious approach to technology is through hardware-the machines, the instruments, the robots. This is certainly an important part of technology, for this dimension of it clearly has a major impact on our lives.

Others, however, like French theologian Jacques Ellul see technology more as technique.’ Technique is a complex of standardized means for achieving a predetermined result. Someone using technology obtains results through a deliberate and rationalized process, using many of the characteristics of technology described above. Technique is the rational organization of behavior, not hardware or output; in other words, technique is like software.

This orientation is more helpful because it allows us to see technology as a cultural phenomenon, a method of organization, an angle of vision. While the products of the technological revolution impact our lives, technology as an organizational method for both thought and social interaction profoundly affects our social reality.

Daniel Bell has also analyzed technology and has defined five essential dimensions: function, energy, fabrication, communication and control, and regulated decision making.’

Function

Function is the primary element in design and relates to nature only insofar as nature is an efficient guide. As noted before, the issue is what something does and how something performs, not why we should do this.

Energy

The technological revolution gradually demanded new power sources, and we fulfilled that need by shifting from natural sources such as wind, water, and personal strength to manufactured sources such as steam and electricity. Now that we are depleting the natural resources required for their generation, we are turning to nuclear power. Our need for power is outstripping both our resources and our capacity to generate it, and this is creating a crisis, nationally and internationally.

Fabrication

Bell uses this word to describe the process of standardization of both parts and actions. This permits the replacement of one part or person with another so that one can achieve greater efficiency. One can use this process in manufacturing, in organizing a corporation, or in education.

Communication and Control

Technological systems feed off information and require increasing amounts of it to keep the system going. Thus, whoever controls the communication system controls the power. Information is useless unless someone communicates it, and technology, through increasing utilization of computer networks, provides an increasingly effective and efficient method of communication and control. Of course, this has vast implications for social power because not everyone will have access to these technologies or know how to use them.

Decision-Making Rules

Since function, fabrication, and communication are critical parts of the technological culture, we need to be assured that there will be coherence in their use and application. Rules of communication and decision making cannot be random or spontaneous, or the vital flow of information may be interrupted. Thus there is a need for speed and accuracy in the decision-making process, which calls for greater standardization, which leads to further decisions about what one will or will not include in decision making. This, of course, leads to a greater centralization of power and reinforces communication and control systems.

Whether understood as hardware or software, technology has profound effects on our everyday lives. Because of this, people see the need to examine technology to predict its effects and to evaluate them. Such assessments will, we hope, help us avoid many undesirable aspects or consequences of a particular technology.

One such method of evaluation is called technological assessment. This is a systematic study of the effects on society that may occur when a technology is introduced, expanded, or modified, with special emphasis on the impacts that are unintended, indirect, and delayed. This method attempts to evaluate a broad range of effects, including-but not limited to- environmental, social, economic, and political dimensions. Thus, a technological assessment seeks to examine as thoroughly as possible the short- and long-term consequences of a technology, its risks and benefits, its social and environmental impacts, and the cultural implications. Only by attending to all of these dimensions can one obtain a full sense of the significance of a technology.

Henk ten Have, a professor of medical ethics in the Netherlands, has argued that we must also recognize that technologies may “recast the initial problem into a new phraseology that may create new concepts; they also relocate problems and may shift responsibility for finding acceptable solutions.”‘ From this perspective an assessment of technology should not only examine the implications of introducing a new technology as noted above, but also examine the impact of technical rationality on ourselves, our personal and professional relations, and our society. This technical rationality has led to a preference for compartmentalization, a diminishment or even distrust of subjectivity, and a preference for instruments and objectivity. This orientation to technological assessment follows from understanding technology as a way of thinking. The important part of a technology assessment, then, is to think of how the introduction of a technology helps us reconceptualize or reimagine who we are as well as our relation to society.

TYPES OF TECHNOLOGY

In his study of technology, Daniel Callahan identified five types of technology.” The purpose of developing this classification schema was to help us see the potential of various technologies as well as understand the impact various technologies have on our lives. They are preservation technologies, improvement technologies, implementation technologies, destructive technologies, and compensatory technologies.

Preservation Technologies

These technologies help us adapt to nature or to survive various environments so we can fit into our environment, or help us investigate our environment. Some examples of these technologies are our homes, furnaces, irrigation systems, eyeglasses, and telescopes.

Improvement Technologies

Technologies such as these enable people to meet their felt needs or to go beyond the limits of their particular natural capabilities. As such, improvement technologies can enhance our physical dimensions or can help decorate or embellish our bodies. Examples of these are genetic engineering, prosthetics, and cosmetic surgery.

Implementation Technologies

These technologies are difficult to describe because their purpose is to assist in the implementation of other technologies. One can best think of these technologies as facilitators or enhancers. Thus, the computer allows us access to other information technologies, and the telephone allows us access to information. Planned obsolescence or the changing fashion allows people to have work.

Destructive Technologies

Technologies such as these are designed with one primary purpose: destruction. They may help us achieve other ends, but the purpose of these technologies is clear from their design. Such technologies may achieve their end through manipulation and control or simply by the capacity for obliteration. Examples are behavior modification technologies, weapon systems, and vacuum aspirators.

Compensatory Technologies

Having developed and implemented all manner of technologies, we now need other technologies to help us deal with the effects of these technologies on our lives. Thus, we have machines to help us exercise, we have noise-canceling headphones to help drown the sounds of other technologies, and we have sensitivity training to enable us to experience the world of nature that we have removed through technology.

UNDERSTANDINGS OF NATURE

Individuals or groups always use or apply technologies within a context. One critical context affected by our view of technology is that of nature. Here, we present three views of nature, developed by Daniel Callahan, to help understand both the arena in which technologies are often applied and some of the presuppositions we bring to them.

Nature as Plastic

In this perspective, one sees nature as alien and removed from human beings. It is outside of us and we are separate from it. It is plastic in that humans can shape and use it in any way human beings see fit. The model assumes that the only limit to nature is the limit human beings put on it. Thus, nature is totally at the disposal of human beings.

Nature as Sacred

This tradition finds a home in both Eastern and Western religious traditions. Taoism suggests conformity to nature so that an individual may become part of the cosmic whole of which nature is a manifestation. The medieval theologian Bonaventure, following the lead of Francis of Assisi, saw nature as the footprints of God. The natural was a reflection of the glory of God. These perspectives create an attitude of stewardship or conservation of nature. While one may intervene, such acts should be discrete, infrequent, and reverent.

Nature as Teleological

This understanding of nature suggests that there is a purpose and logic in nature. There is an inner dynamism that leads nature to certain ends. There is a limit that prevents the violation of nature. Thus, the extent of interventions into nature is set by the dynamism of nature itself.

What we think we can do determines, in part, what we do. If, for example, we think that nature is only an object existing apart from us, we may be willing to consider more interventions than if we thought of it as being part of an organic whole that is sensitive to interventions.

Ironically, the Judeo-Christian tradition is partly responsible for the desacralization of nature. In its clear and firm rejection of idolatry and its affirmation of God’s being a God of nature rather than a God in nature, that tradition helped validate the objectification of nature. While many in that tradition would not want to intervene to the same extent that others have, nonetheless the balance is a difficult one to maintain.

RESPONSIBILITIES OF SCIENTISTS

In addition to thinking about the various meanings of technology and nature, we also need to think of the responsibilities of the scientists, for these are the individuals most directly involved in interventions into nature. James Gustafson proposed four models we can use to think about professional responsibility in this area and to evaluate the consequences of a particular position.’

Total Intervention

In this position, scientists would have the right to do whatever is possible; some call this the technological imperative. The justification for this position is the inherent value of knowledge itself. This is complemented by the valuing of intellectual curiosity and the seemingly inherent human drive to solve problems. In this model the only limit is the lack of technical capacity.

No Intervention

This blanket prohibition is based on either a view of nature as sacred and therefore inviolable or a conviction that the proposed research violates a limit imposed by nature. This model is reminiscent of the position of some Native Americans who refused to practice agriculture because to do so was to rip up the breast of their mother, the earth. Total consistency in this position would lead to the reduction of the human community to huntingand-gathering societies. Thus, many individuals would not use this principle absolutely but would rather understand it as a strong check on the previous understanding of intervention.

Limited Interventions

This perspective argues that scientists have no right to change the most distinctive human characteristics. This model, related to an understanding of nature as teleological, sees interventions checked by a particular limit: human nature. Thus, one can intervene in nature (as opposed to the second model) but human nature is the boundary, not lack of technical capacity (as in the first model).

Directed Interventions

This model says that scientists have the right to foster the growth of valued human characteristics and to remove those that are harmful. This model suggests a high level of intervention both to control and to direct human development. The goal is quality of life, and it is served by directing human growth and removing obstacles to its fulfillment.

Clearly, nobody practices these models in a pure form, but we do find traces of them in most of us. The issue is to use these perspectives to understand better why we are intervening in nature and to ask if there are any restraints on this. In other words, one can use these models as a way to evaluate a scientist’s responsibility in the development and use of technology.

SOCIETY, SCIENCE, AND TECHNOLOGY

For those who are not bench scientists, a helpful way to think about being responsible with technology is to consider the relationships between society, science, and technology. Ian Barbour illustrates three ways to understand technology: technology as threat, technology as liberator, and technology as an instrument of power.’° Barbour argues that technology should be seen as an instrument of power, formed by dynamic interactions between society, science, and technology itself. Because institutions yield these instruments and exercise their powers, technology serves institutional interests, which include human values (e.g., goods necessary for human beings to flourish), expansion of human knowledge (a value itself), profit, and so on. These interests interact and help shape the research, development, marketing, and use of technology across a wide array of human situations. It is within these situations that individuals and groups face the profound bioethical questions in the responsible use of these technologies.

SUMMARY

If we look around us, it is clear that technology is here to stay. Our culture is utterly dependent on

various aspects of it. We could not get through our day without technology. From clocks to microwaves to transportation systems to digital video recorders and high-definition TV, our lives, work, and entertainment are inherently tied up with technology.

Our quality of life has greatly increased because of technology. We live in greater comfort in various climates. We have abundant food and water supplies, we can communicate and travel much more efficiently, and our health has improved.

After two world wars and attacks such as the one on September 11, 2001, we have become acutely aware of how some can use technology to cause terror and suffering throughout the world. We stand in daily dread of the release of weapons that could destroy us-whether they are designed for destruction (e.g., nuclear weapons) or not (e.g., commercial aircraft). We have more information accessible to us but we know less of what it means or what to do with it. Pollution, a byproduct of our technical culture, is threatening to destroy our ecosystem. Many resources needed for daily living are in short supply or in danger of being depleted.

Thus many benefits and problems are given to us by technology. Each requires much study and examination. But it is to one

DISCUSSION QUESTIONS

1. What are the costs and benefits, the strengths and weaknesses, of the vast technological society that has developed in America?

2. What are some examples of unintended and delayed side effects of technology? Do you think these could have been avoided?

3. Develop lists of examples of the various types of technologies. What needs are these technologies meant to satisfy? What values are these technologies based on?

4. How has technology benefited your life? How has it complicated your life?

5. Which is more helpful for you: to think of technology as hardware or as a system? Why?

NOTES

1. David Zilberman, Holly Ameden, and Matin Qaim, “The Impact of Agricultural Biotechnology on Yields, Risks, and Biodiversity in Low-Income Countries,” Journal of Developmental Studies 43 (2007): 63-78.

2. Victor de Lorenzo, “Blueprint of an Oil-Eating Bacterium,” Nature Biotechnology 24 (2006): 952-53.

3. Tao Xu, Joyce Jin, Cassie Gregory, James J. Hickman, and Thomas Boland, “Inkjet Printing of Viable Mammalian Cells,” Biomaterials 26 (2005): 93-99.

4. Norman J. Faramelli, Technethics (New York: Friendship Press, 1971), 31 ff.

5. Jacques Ellul, The Technological Society (New York: Vintage Books, 1964), 13ff.

6. Daniel Bell, faculty seminar presentation (Worchester Polytechnic Institute, 1976); see also idem, The Coming of the PostIndustrial Society: A Venture in Social Forecasting (New York: Basic Books, 1973).

7. Henk A. M. J. ten Have, “Medical Technology Assessment and Ethics: Ambivalent Relations,” Hastings Center Report 25 (September-October 1995): 18.

8. Daniel Callahan, The Tyranny of Survival (New York: Macmillan, 1973), 55ff.

9. James Gustafson, “Basic Issues in the Biomedical Fields,” Soundings 53 (Summer 1970): 151ff.

10. Ian G. Barbour, Ethics in an Age of Technology: The Gifford Lectures 1989-1991, vol. 2 (New York: HarperCollins Publishers, 1993), 3-25.

BIBLIOGRAPHY

Barbour, Ian. Ethics in an Age of Technology: The Gifford Lectures 1989-1991. Volume 2. New York: HarperCollins Publishers, 1993.

ed. Science and Religion. San Francisco: Harper and Row, 1968.

Bell, Daniel. The Coming of the Post-Industrial Society: A Venture in Social Forecasting. New York: Basic Books, 1973.

Bronowsky, Joseph. Science and Human Values. San Francisco: Harper and Row, 1965.

Bross, I. D. J. “Metatechnology: A Technology for the Safe, Effective, and Economical Use of Technology.” Theoretical Medicine 2 (1981): 145-53.

Callahan, Daniel. The Tyranny of Survival. New York: Macmillan, 1973.

de Lorenzo, Victor. “Blueprint of an Oil-Eating Bacterium.” Nature Biotechnology 24 (2006): 952- 53.

Diamond, Jared. Guns, Germs, and Steel. New York: W. W. Norton & Co., 2005.

Ehrlich, Paul R. Human Natures. Washington, DC: Island Press, 2000.

Ellul, Jacques. The Technological Society. New York: Vintage Books, 1964.

Faramelli, Norman J. Technethics. New York: Friendship Press, 1971.

Ferkiss, Victor C. The Future of Technological Civilization: The Myth and the Reality. New York: George Braziller, 1969.

Gustafson, James. “Basic Issues in the Biomedical Fields.” Soundings 53 (Summer 1970): 151-80.

Hardin, Garrett. Exploring New Ethics for Survival: The Voyage of Spaceship Beagle. New York: Viking Press, 1972.

Haring, Bernhard. Ethics of Manipulation: Issues in Medicine, Behavior Control, and Genetics. New York: Seabury Press, 1975.

Have, Henk A. M. J. ten. “Medical Technology Assessment and Ethics: Ambivalent Relations.” The Hastings Center Report 25 (September-October 1995): 13-19.

Kuhn, Thomas. The Structure of Scientific Revolutions. Chicago: University of Chicago Press, 1970.

Lappe, Marc. Genetic Politics: The Limits of Biological Control. New York: Simon and Schuster, 1977.

Lock, Margaret, and Deborah Gordon. Biomedicine Reconsidered. Dordrecht: Kluwer, 1988.

MacKay, Donald. Human Science and Human Dignity. Downers Grove, IL: Intervarsity Press, 1979.

Shinn, Roger. Forced Options: Social Decisions for the 21st Century. San Francisco: Harper and Row, 1982.

Shinn, Roger, and Paul Abrecht, eds. Faith and Science in an Unjust World: Report of the World Council of Churches’ Conference on Faith, Science, and the Future. 2 vols. Geneva: World Council of Churches, 1981.

Xu, Tao, Joyce Jin, Cassie Gregory, James J. Hickman, and Thomas Boland. “Inkjet Printing of Viable Mammalian Cells.” Biomaterials 26 (2005): 93-99.

Zilberman, David, Holly Ameden, and Matin Qaim. “The Impact of Agricultural Biotechnology on Yields, Risks, and Biodiversity in Low-Income Countries.” Journal of Developmental Studies 43 (2007): 63-78.

INTRODUCTION

In the last chapter, we saw the importance of responsibility in the research, development, and use of technology, including biomedical technology. In this chapter, we will explore ways we can judge which uses of technology, or our moral choices, are the most responsible. This examination of the criteria upon which one bases such decisions is called ethical analysis. Our principal goal is to prepare you for some of the discussions that will emerge in the various topics we will cover and to suggest basic frameworks for ethical analysis.

ETHICAL ISSUES

What are ethical issues? One can think of ethical issues as the variables one considers in making a judgment or decision about which option is the best or more morally viable. Ethical issues can constitute a range of areas in the moral life-from the macro-level issues in public policy to the micro- level issues of end-of-life treatment decisions at a patient’s bedside. We cannot, however, address ethical issues in a vacuum; we need an overarching framework or structure to analyze them properly. Thus, to answer the question, How do we make ethical judgments or responsible decisions? we apply ethical theories, which are informed by the various ethical issues at stake.

ETHICAL THEORIES

In general, an ethical theory is the process by which we justify a particular decision or answer a specific normative question; a theory provides an overarching framework in which one addresses and evaluates ethical issues. Ethical theories organize complex information and competing values and interests, and help us formulate answers to questions such as What should I do? What kind of person should I be? or What is the right course of action? The main purpose of a theory is to provide consistency and coherence in our decision making. That is, an ethical theory gives us a common approach to various problems. If we have a theory, we do not have to figure out where to begin each time we meet a new problem. A theory also allows us to develop some degree of consistency in our decision making; we aim at reliable patterns of practical reason, not whimsical emotional or uncritical reactions. We will begin to see how different values relate to one another. If we are consistent and coherent in our decision making, we will have a greater degree of internal unity and integrity in our decision making. Given the complexity of problems in bioethics, these qualities are extremely worthwhile.

One can organize different kinds of ethical theories in two categories: action-based theories and character-based theories. There are two very basic sets of moral questions one can ask.’ The first

kind of questions has to do with human behavior in action: an ethics of doing. The second kind of questions has to do with being human itself: an ethics of being. Generally speaking, all ethical theories address aspects of the moral life: what it is, how to live it, and so on. Action-based ethical theories are basically oriented to answering ethical questions of the first kind-ethics of doing. They attempt to figure out what is the right or good thing to do. We already discussed two kinds of action- based theories (deontology and teleology) in chapter 1. Character-based ethical theories, in the broadest sense of the term, are basically oriented to answering ethical questions of the second kind- ethics of being. They attempt to figure out who a good person is and what such a person ought to do.

Our goal in this section is to introduce the basic structures of various ethical theories and briefly sketch some advantages and disadvantages of each. Unfortunately, we cannot provide a thorough examination of ethical theories that many moral philosophers have proffered. Instead, we have provided a list of works in the bibliography regarding moral philosophy and theology of ethical theory. Thus, this section is not exhaustive of (a) the variety of ethical theories or (b) the analyses of them.

Action-Based Ethical Theories

Action-based ethical theories address moral questions pertaining to human behavior in action. In this regard, an ethics of doing can move in two directions: an evaluation of the means (the act, process, or way a human behaves) or an evaluation of the ends (the ends, outcomes, or consequences of the particular human behavior). On the one hand, we saw in chapter 1 that teleological ethical theories, like consequentialism, assess the values, goods, benefits, or utility in relation to the disvalues, evils, harms, or burdens in the results of a human action. Deontological ethical theories, on the other hand, assess the action itself by reference to particular rules, duties, or norms, which ask primarily whether the means constitute or violate such duties.

Teleological Ethics. An action-based ethical theory, like consequentialism, answers the question, What should I do? by considering the consequences of various options in a decision. That is, what is ethical is the option that brings about consequences that have the greatest number of advantages over disadvantages or that generate the greatest good for the greatest number of people. Basically, in this theory, one determines what is moral by looking to outcomes, to consequences, and to the situation.

The ethical theories of situation ethics and utilitarianism are common types of action-based, consequentialist ethical theories. We discussed situation ethics in but another common consequentialist theory is utilitarianism, which Jeremy Bentham and John Stuart Mill developed.’ Utilitarianism states that what is moral maximizes “utility” in the consequences of an act-for example, the greatest good for the greatest number of people. A principle of utility specifies what constitutes “utility” or what is “useful.” A consequence (or set of consequences) may have utility if (on balance) it evokes happiness, including, pleasure, health, knowledge, and so forth.

The major benefit of this kind of theory is that it looks to the actual impact of a particular decision and asks how such a decision will affect people. Consequentialism is attuned to the nuances of life and seeks to be responsive to them. The major problem of this theory is that the theory itself provides no standard by which one could measure one outcome against another. That is, while being sensitive to the circumstances, consequentialism has no basis for evaluating the relative merits or problems of

one outcome against another.

Deontological Ethics. Deontological ethics looks to one’s obligations to determine what is moral. This theory answers the question What should I do? by specifying one’s obligations or moral duties. That is, the moral act is one in which one meets his or her obligations, his or her responsibilities, or fulfills his or her duties. For a deontologist, obligations and rules are primary, for only by attending to these dimensions of morality can one be sure that self-interest does not override moral obligations. The Ten Commandments, Kant’s Categorical Imperative,’ and certain forms of rights ethics are probably the most common examples of deontological ethics.

Rights ethics is a theory that resolves moral dilemmas by first determining what rights or moral claims are involved. Then one settles dilemmas in terms of a hierarchy of rights. Paramount for a person of this orientation is that the moral claims of individualstheir rights-are taken seriously. Rights may include duties, privileges, or entitlements. The duties relative to certain rights may be the duty of the subject (e.g., the right to vote implies a duty and a privilege to vote) or a duty on others (e.g., the right to privacy suggests a duty not to invade another’s privacy). The ethical theory of rights is a popular one in our American culture. Consider, for example, the central role this theory plays in abortion and health care access debates.

On the one hand, the main advantage of a rights theory is that it highlights the moral centrality of the person and his or her moral claims in a situation of ethical conflict. On the other hand, this theory does not tell us how to resolve conflicts of rights between individuals. The theory makes the claims of the individual central without telling us how to resolve potential conflicts of rights.

The major benefit of deontological ethics is the clarity and certainty of its starting point. Once the rules are known, the duties determined, or the rights identified, then what is ethical is evident. The major problem is the potential insensitivity to circumstances and consequences. By looking only at duty or rights, one may miss important aspects of a problem.

Character-Based Ethical Theories

Character-based ethical theories address moral questions dealing with who good persons are and how they ought to relate to one another. In these ways, an ethics of being deals with character traits (e.g., virtues and vices) as well as human relationships. Many philosophers have critiqued character- based ethics for being too subjective or relative to individuals or their particular communities. With feminism and the work of scholars such as Edmund Pellegrino and David Thomasma, Alasdair Maclntyre, Carol Gilligan, and others, however, ethics of being has seen a revival in recent years. We will consider briefly three kinds of character-based ethics here.

Virtue Ethics. Virtue ethics comes from a long line of philosophers and theologians dating at least all the way back to Ancient Greece. For example, Aristotle developed a virtue-based theory of ethics,’ and Thomas Aquinas built upon Aristotle’s work for Christianity. More recently, Alasdair Maclntyre revitalizes this approach to ethics; Edmund Pellegrino and David Thomasma apply it to the practice of medicine.’ James Keenan asks what virtue ethics can bring to discussions of the new genetics.` In its basic form, virtue ethics is about making a habit of good behavior; that is, making good behavior a part of who we are. A virtue, or a vice, is a character trait that describes one’s

orientation to certain goods and the behaviors that seek those goods. Like all characterbased theories, virtue ethics sees an intimate relationship between what we do and who we are. Thus, the virtue- related questions include, What would a virtuous physician do when faced with physician-assisted suicide? What (or who) is a virtuous physician? What does it mean to be a virtuous parent? By wanting to become a virtuous parent, should I use assisted reproductive technology or adopt?

character-based ethical theory is relationality-responsibility. Charles Curran adapts this model from the work of H. Richard Niebuhr and offers it up as an alternative to consequentialist or deontological ethical models.’ Stephen Happel and James Walter describe the relationalityresponsibility model as one that places emphasis on the subject of moral experience-the human person-and that uses the thematic image of “persons as responsible” to represent moral experience.’ Curran outlines the basic form of relationalityresponsibility in this way:

Responsibility involves (1) response to an action upon us; (2) in accord with our interpretation of what is going on; (3) with a willingness to be accountable for any reaction to our reaction; and (4) in solidarity with the continuing community of agents. I would, however, modify this model by calling on persons to initiate action as well as respond to the actions of others.”

Ethics of Caring. Lawrence Kohlberg studied human moral psychology and outlined the major stages of moral development, which culminated in a commitment to justice.’° Carol Gilligan evaluated the research, conducted her own, and concluded something very important and challenging: men and women develop differently when it comes to their senses of morality. Her book, In a Different Voice, suggests that women tend to prioritize caring above justice.” Inspired in part by Gilligan’s perspective, other scholars developed the approach to ethics known as ethics of caring. Ethics of caring is about a disposition to one another grounded in a transformative relationship resulting in care and one who is caring. It is arguably a character-based ethic because in this theory human relationships inform who one should be. This approach has been important in the evolution of the ethics of the healing professions, especially nursing ethics.

CONCLUSION

As you read this book and discuss the problems contained in it, you will find yourself using one or more of these theories in trying to convince yourself or others of the correctness of a particular position. You may also find it interesting to adopt one theory to see how it works and where it will lead you. Discovering the theory with which you are most comfortable, and being attentive to the methods others are using, is a first step toward gaining clarity in the discussions and debates about complex bioethical problems.

DISCUSSION QUESTIONS

1. What major ethical theory do you primarily use in decision making?

2. Can someone use more than one ethical theory in solving a problem? Why or why not?

NOTES

1. See Michael R. Panicola, David M. Belde, John Paul Slosar, and Mark F. Repenshek, An Introduction to Health Care Ethics: Theological Foundations, Contemporary Issues, and Controversial Cases (Winona, MN: Saint Mary’s Press, 2007), 22-43.

2. For example, see John Stuart Mill, Utilitarianism, ed. Oskar Piest (New York: Macmillan, 1957).

3. Immanuel Kant, Groundwork for the Metaphysics of Morals, ed. and trans. Allen W. Wood (New Haven, CT: Yale University Press, 2002).

4. Aristotle, “Nichomachean Ethics,” in The Complete Works of Aristotle: The Revised Oxford Translation, vol. 2, ed. Jonathan Barnes, trans. W. D. Ross, rev. J. O. Urmson (Princeton, NJ: Princeton University Press, 1984), 1729-1867.

5. See Alasdair Maclntyre, After Virtue: A Study in Moral Theory, 2nd ed. (Notre Dame, IN: University of Notre Dame Press, 1984); Edmund Pellegrino and David Thomasma, The in Medical Practice (Washington, DC: Georgetown University Press, 1996); idem, The Virtues in Medical Practice (New York: Oxford University Press, 1993); and idem, A Philosophical Basis of Medical Practice: Toward a Philosophy and Ethic of the Healing Professions (New York: Oxford University Press, 1981).

6. James E Keenan, “What Does Virtue Ethics Bring to Genetics?” in Genetics, Theology, and Ethics: An Interdisciplinary Conversation, ed. Lisa Sowle Cahill (New York: Crossroad, 2005), 97- 113.

7. Charles E. Curran, The Catholic Moral Tradition Today: A Synthesis (Washington, DC: Georgetown University Press, 1999), 73-83; see also H. Richard Niebuhr, The Responsible Self (New York: HarperCollins Publishers, 1963).

8. Stephen Happel and James J. Walter, Conversion and Discipleship: A Christian Foundation for Ethics and Doctrine (Philadelphia: Fortress Press, 1986), 165-67. Happel and Walter go as far as to say that the relationality-responsibility model is, in fact, a virtue-dominant model.

9. Curran, Catholic Moral Tradition, 73.

10. Lawrence Kohlberg, The Philosophy of Moral Development: Moral Stages and the Idea of Justice, 1st ed. (San Francisco: Harper & Row, 1981).

11. Carol Gilligan, In a Different Voice: Psychological Theory and Women’s Development (Cambridge, MA: Harvard University Press, 1993).

BIBLIOGRAPHY

Aiken, Henry David. Reason and Conduct: New Bearings in Moral Philosophy. New York: Alfred A. Knopf, 1962.

Aristotle. “Nichomachean Ethics.” In The Complete Works of Aristotle: The Revised Oxford

Translation, vol. 2. Edited by Jonathan Barnes. Translated by W. D. Ross. Revised by J. O. Urmson. Princeton, NJ: Princeton University Press, 1984, 1729-1867.

Broad, C. D. Five Types of Ethical Theory. London: Routledge & Kegan Paul, 1956.

Curran, Charles E. The Catholic Moral Tradition Today: A Synthesis. Washington, DC: Georgetown University Press, 1999.

Gilligan, Carol. In a Different Voice: Psychological Theory and Women’s Development. Cambridge, MA: Harvard University Press, 1993.

Gula, Richard M. Reason Informed by Faith: Foundations of Catholic Morality. New York: Paulist Press, 1989.

Happel, Stephen, and James J. Walter. Conversion and Discipleship: A Christian Foundation for Ethics and Doctrine. Minneapolis: Fortress Press, 2007.

Harrington, Daniel, and James Keenan. Jesus and Virtue Ethics: Building Bridges between New Testament Studies and Moral Theology. Lanham, MD: Sheed & Ward, 2002.

Jonsen, Albert R., and Stephen Toulmin. The Abuse of Casuistry: A History of Moral Reasoning. Berkeley: University of California Press, 1988.

Kant, Immanuel. Groundwork for the Metaphysics of Morals. Edited and translated by Allen W. Wood. New Haven, CT: Yale University Press, 2002.

Keenan, James E “What Does Virtue Ethics Bring to Genetics?” In Genetics, Theology, and Ethics: An Interdisciplinary Conversation. Edited by Lisa Sowle Cahill. New York: Crossroad, 2005, 97- 113.

Kohlberg, Lawrence. The Philosophy of Moral Development: Moral Stages and the Idea of Justice. 1st ed. San Francisco, CA: Harper & Row, 1981.

Lonergan, Bernard. Collected Works of Bernard Lonergan. Vol. 3, Insight: A Study of Human Understanding. Edited by Frederick E. Crowe and Robert M. Doran. Toronto: Lonergan Research Institute, 1992.

Maclntyre, Alasdair. After Virtue: A Study in Moral Theory. 2nd ed. Notre Dame, IN: University of Notre Dame Press, 1984.

A Short History of Ethics: A History of Moral Philosophy from the Homeric Age to the Twentieth Century. 2nd ed. Notre Dame, IN: University of Notre Dame Press, 1998.

Three Rival Versions of Moral Enquiry: Encyclopedia, Genealogy, and Tradition. Notre Dame, IN: University of Notre Dame Press, 1990.

Whose Justice? Which Rationality? Notre Dame, IN: University of Notre Dame Press, 1988.

Mahoney, John. The Making of Moral Theology: A Study of the Roman Catholic Tradition. New York: Clarendon Press, 1987.

Mill, John Stuart. Utilitarianism. Edited by Oskar Piest. New York: Macmillan, 1957.

Moore, G. E. Ethics and “The Nature of Moral Philosophy.” Edited by William H. Shaw. New York: Clarendon Press, 2005.

. Principia Ethica. Cambridge: Cambridge University Press, 1959.

Niebuhr, H. Richard. The Responsible Self. New York: Harper- Collins Publishers, 1963.

Panicola, Michael R., David M. Belde, John Paul Slosar, and Mark E Repenshek. An Introduction to Health Care Ethics: Theological Foundations, Contemporary Issues, and Controversial Cases. Winona, MN: Saint Mary’s Press, 2007.

Pellegrino, Edmund, and David Thomasma. The Christian Virtues in Medical Practice. Washington, DC: Georgetown University Press, 1996.

. A Philosophical Basis of Medical Practice: Toward a Philosophy and Ethic of the Healing Professions. New York: Oxford University Press, 1981.

. The Virtues in Medical Practice. New York: Oxford University Press, 1993.

Plato. Republic. In Plato: Complete Works. Edited by John M. Cooper. Translated by Grube. Revised by Reeve. Indianapolis, IN: Hackett Publishing Company, 1997, 971-1223.

Porter, Jean. Natural and Divine Law: Reclaiming the Tradition for Christian Ethics. Grand Rapids, MI: William B. Eerdmans, 1999.

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Salzman, Todd A. What Are They Saying about Catholic Ethical Method? New York: Paulist Press, 2003.

Selling, Joseph A., ed. Personalist Morals: Essays in Honor of Professor Louis Janssens. Leuven: Leuven University Press, 1988.

Shafer-Landau, Russ. Ethical Theory: An Anthology. Malden, MA: Blackwell Publishing, 2007.

Traina, Cristina L. H. Feminist Ethics and Natural Law: The End of Anathemas. Washington, DC: Georgetown University Press, 1999.

INTRODUCTION

Philosophers and theologians, like physicians, nurses, lawyers, and other professionals, have their own language and jargon. This chapter will introduce you to some of the basic concepts and terms used in bioethical discussions so you can join in on the conversations.

In The Birth of Bioethics, Albert Jonsen notes that when one sees bioethics as a discourse, there are several different contexts within which the conversations happen.’ Bioethics discussions occur in high schools, colleges, and graduate and professional schools (e.g., nursing and medical schools). They also occur in the clinical setting with an institution’s ethics committee or during clinical bioethics consultations at patients’ bedsides. We also discuss bioethics in the community and hear about issues through the media.

Bioethics discourse happens when presidential candidates debate their platforms on stem cell research or when Congress develops laws prohibiting human cloning. Governments also have special commissions and councils, like the President’s Council on Bioethics. Bioethics discourse happens in judicial reviews and court rulings, as in, for example, the Cruzan case. There are organizations-think tanks, businesses, and professional associations-who participate in bioethics discourse, too. In all of these contexts, there are common threads: the terms of bioethics serve as conceptual currency in the exchange of ideas, in the debates, and in the discussions we have. Though bioethics discourse has evolved, it still requires concepts and terms. Therefore, knowing the major concepts and terms of bioethics discourse is essential if one wishes to participate in the field of bioethics.

We divide this chapter into two parts. In the first part, we will outline some fundamental terms used in general ethical discourse. In the second part, we will elaborate on some common terms used in bioethical discourse.

Moral Norms

Moral norms are propositions proscribing or prescribing certain behaviors; they set standards for the moral life. There are three basic kinds of moral norms: formal norms, material norms, and virtually exceptionless material norms.’ Formal moral norms are the more universally applicable, abstract, and general norms. An example of this is the primary precept of the natural law according to Aquinas: good is to be done and evil avoided. Who could dispute that standard? The problem is in specifying what is good and what is evil. Thus, as one gets more specific, one begins to articulate material moral norms. Material moral norms are the more narrowly applicable, concrete, and specific norms. An example of this kind of norm is the following: one should obtain informed consent of

human research subjects before conducting the experiment. Virtually exceptionless material norms are material moral norms for which it is nearly impossible to think of exceptions. An example might be “it is wrong to torture children with hot irons.” It is hard to think of circumstances in which torturing children would be justifiable regardless of the reasons one has or the tools one uses.

Principles

Despite how common it is, the word principle is a fairly complex word and can mean a variety of things. We will describe three general uses of the word principle. In the first use, principles serve an evaluative function. This function helps us to find meaning in a situation and to analyze it. An example of this kind is the Principle of Double Effect. The Principle of Double Effect helps one evaluate actions that have both good effects and bad effects in order to determine which morally permissible. In another use, principles perform an axiomatic function. That is, they help guide our behavior by describing rules of conduct (axioms); principles might proscribe certain behavior (“thou shall not murder”) or prescribe other behavior (“love your neighbor”). Finally, principles operate in an axiological way.’ Here, principles help us identify what is valuable and worthy, or disvaluable and harmful, and so on. The Principle of Autonomy, for example, suggests that autonomy is of significant value and should be protected: we should act in ways that minimize our intrusion in another person’s autonomy.

One should not confuse the term principles with a popular method in bioethics: principlism. Principlism developed out of early discussions in bioethics (e.g., “The Belmont Report”4) and was canonized by Tom Beauchamp and James Childress in their text, The Principles of Biomedical Ethics.’ Principlism seeks to determine what the right course of action is by examining, specifying, and balancing the biomedical principles at work (i.e., autonomy, beneficence, nonmaleficence, and justice).

Laws

Laws are an authoritative expression of certain rules, norms, or principles. There are several different kinds of laws. For example, there is civil law, moral law, and divine or eternal law (i.e., God’s law). In the Catholic tradition, the natural law is an expression of the moral law, which is related to how human beings experience the eternal law. The differences between civil law and moral law indicate that what is legally required may not be what is morally required. Furthermore, even though a civil law may not say that an action is illegal, this does not mean that the action is morally acceptable. For example, many believe that even though the law protects a woman’s right to an abortion, obtaining an abortion when there is not a medical reason is immoral. In fact, some in that camp wish to change the law to reflect more closely their view of the morality of abortion. The point here is to remember that what is legal is not necessarily moral and vice versa.

Justice

Justice is a concept one explores to determine the relevant properties or characteristics of people or circumstances necessary for fairness.’ Difficulties arise when determining what is fair in a particular case. Is it equal share? Is it fair if one person gets more health care and another person gets less? Justice can be understood in two basic ways: it can be either comparative or noncomparative.

Comparative justice seeks to compare the needs or claims of one person or group against the same needs or claims of another person or group. Alternatively, noncomparative justice seeks fairness without comparing needs or claims of the individuals or groups after the same resource.

In bioethics, there are three basic types of justice involved: distributive, commutative, and contributive justice. To begin, distributive justice is perhaps the most common form of justice in bioethics discussions. Distributive justice asks What does society owe to the individual? The individual can be understood as a person or as an organization or group. Here, the common dilemmas are rationing scarce health care resources, access to health care, and so forth.

Should there be a universal health insurance program with a single payer (i.e., the federal government) in the United States? We will return to distributive justice below when we consider how we should allocate health care resources; this requires a material principle of justice. Next, commutative justice involves the exchange of goods (or burdens) between individuals or groups. Commutative justice asks, What does one owe another? What price is fair for over-the-counter medications? Finally, contributive justice involves questions of an individual’s duty to society. In other words, contributive justice asks, What does an individual owe to society? What should a person or group contribute to the health care system? What amount of taxation on an individual would be fair in order for a government to pay for health care? Does a person have a duty to eat well and avoid risky behaviors such as smoking to promote a just health care system?

You might ask, however, Given all these types of justice, how do we figure out what is owed? In other words, recognizing the question is one thing, but we still have to figure out how to deal with the situation. In order to move toward resolution, and away from injustice, one uses principles of justice, which can be formal or material. A formal principle of justice is noncomparative in that it states a rule by which someone measures distributions. It proposes a standard independent of the properties (e.g., needs) of individuals. The rule does not, however, tell how we determine what qualifies as equality, inequality, or equity. That is, with respect to what standard is someone equal or unequal? What is morally relevant in our determining equality and inequality? The strength of the formal principle of justice is that it gives us a clear rule; its major deficit is that it does not specify how to apply it.

To cope with the problem of applications, philosophers devised material principles of justice. Generally speaking, a material principle of justice identifies some relevant property or criterion on the basis of which one can judge a distribution. Thus, material principles of justice are typically, though not always, comparative in that they examine needs or qualifications and on that basis determine what to do. Let us illustrate this by identifying several of these material principles of justice one can use in determining distributive fairness.

First is the noncomparative material principle of to each an equal share. The standard is strict quantitative equality, and one arrives at this by dividing what is to be allocated by the number of actual recipients. Second is distribution according to individual need. Here, one looks at specific needs of individuals and judges them. For example, this comparative material principle evaluates one’s health needs against another s. Third is social worth criteria, which go beyond needs and evaluate the status of an individual and his or her actual or potential contributions to society. Fourth is the final form of material justice, which is distribution according to individual effort or merit. This

criterion does not necessarily examine one’s accomplishments but looks at what one attempted and the efforts to realize his or her goals. The higher the effort, the greater the reward.

Each of these principles has its benefits and problems, and because of this some philosophers have suggested a middle way.’ This method of allocation emphasizes formal equality but shifts this by utilizing equality of opportunity rather than one of the comparative forms of justice. This method of distribution is randomized either through a lottery or by distribution to people as they show up.

On the one hand, the obvious benefit of this method is that it protects strongly our intuitive sense of respect for people. That is, randomization provides a formal rule of allocation that does not force us to make invidious and potentially harmful choices between people based on assumptions about social worth. Individuals maintain their dignity because they will be treated fairly by having an equality of opportunity. Finally, such a system will help maintain trust between members of the health care team and the patient. The patient is not at the mercy of biases of an institution or of individuals, but rather knows that he or she will be treated fairly.

On the other hand, this standard does not deal with some important questions. First, should there be some medical screen through which one should pass before entering the door? Second, should one’s condition or likelihood of benefit be considered? That is, if a fifteen-year-old is more likely to benefit from a procedure than an eighty-year-old, should the eighty-year-old have an equal opportunity for treatment? Third, the mode of distribution assumes an endless supply of resources in that the only relevant criterion is equality of opportunity, not appropriateness of intervention.

From this discussion one can easily see not only why discussions of justice are important in bioethics, but also why they are among the most complex.

Human Dignity

Human dignity is a term that is not clearly defined and it can mean many different things. The term dignity comes from the Latin words dignitas and dignus, which mean worth and worthy, respectively. In some ways, we use the term human dignity as a way to understand the value or worth of human life. Alternatively, we use human dignity to describe the moral status of individualswhether someone or something is part of our moral community and, therefore, worthy of protection and respect.

Reflecting on human dignity, Daniel Sulmasy classifies different kinds of value.’ Sulmasy argues that one can understand values as attributed, intrinsic, or derivative. For our purposes, it is important to highlight the first two. For example, people attribute dignity to others because they possess certain traits (e.g., higher brain function) or are socially useful (e.g., they have important jobs). Others argue that people have dignity by virtue of being human or by being created by God. That is, human beings have intrinsic dignity.

Human dignity arises in a variety of bioethical contexts. One can see human dignity in various beginning of life issues: for example, abortion, reproductive technologies, and embryonic stem cell research. One can also see human dignity in end-of-life issues like forgoing or withdrawing medical treatment, euthanasia, and physician-assisted suicide. As you can imagine, human dignity is a central concept in bioethics.

Beneficence and Non maleficence

Nonmaleficence is the technical way of stating that we have an obligation not to harm people-one of the most traditional ethical principles of medical ethics: “First of all, do no harm.” This is the basic principle derived from the Hippocratic tradition. If we are unable to benefit someone, then at least we should do them no harm.

The harm we are to avoid is typically understood as physical or mental, but harm can also include injuries to one’s interests. Thus, Dr. C harms Mr. A by having Mr. A’s property unjustly taken or by having his access to it restricted. Or, we can harm Ms. B by unfairly restricting her liberty of speech or action. Another example of this kind of harm is identity theft. Although there is not necessarily a physical impact on us from these latter harms, nonetheless constraining our interests does harm us.

Though the Principle of Nonmaleficence° clearly imposes a duty not to harm someone intentionally or directly, it is also possible to expose others to a risk of harm. For example, if we drive too fast, we may not actually harm someone, but we are clearly exposing others to the risk of harm. Thus, the duty of nonmaleficence would prohibit speeding. There are, however, other situations in which individuals are exposed to the risk of harm where the duty of nonmaleficence is not necessarily violated. A doctor giving a patient chemotherapy is exposing the patient to various risks of harm from the therapy.

Beneficence is the positive dimension of nonmaleficence. The Principle of Beneficence entails a duty to help others further their own interests when we can do this without risk to ourselves. Thus, the duty of beneficence argues that we have a positive obligation to regard the welfare of others, to be of assistance to others as they attempt to fulfill their plans. The duty of beneficence is based on a sense of fair play. It basically suggests that because we receive benefits from others, because others have helped us along the way, we have an obligation to return that same favor to them. Beneficence is a way of ensuring reciprocity in our relations and of passing along to others the goods we have received in the

But this duty is not without limits. The limits include harm to one’s self. Beauchamp and Childress identify a process that one can use to evaluate the risk of harm to determine the degree of one’s obligation. First, the individual we are to help is at risk of significant loss or danger. Second, one can perform an act directly relevant to preventing this loss or damage. Third, one’s act is likely to prevent this damage or loss. Fourth, the benefits the individual receives as a consequence of my actions (a) outweigh harms to myself and (b) present minimal risk to self. Thus, we have the necessity of making a prudential calculation about risks and benefits. Sometimes this calculation may be clear. If someone is drowning and I cannot swim, I am not obligated to go in the water to help that person, although I would be obligated to assist in other ways. At other times, the calculation may not be as clear. For example, if I’m a medic on a battlefield, do I have to cross the line of fire, or a minefield, to treat injured soldiers?

Autonomy

Autonomy is a form of personal liberty of action in which the individual determines his or her course of action in accordance with a plan of his or her own choosing.” Autonomy involves two

elements: First is the capacity to deliberate about a plan of action. One must be capable of examining alternatives and distinguishing between them. Second, one must have the capacity to put one’s plan into action. Autonomy includes the ability to actualize or carry out what one has decided.

In many ways, autonomy is the all-American value. It affirms that we ought to be the master of our own fate or the captain of our ship. Autonomy mandates a strong sense of personal responsibility for our own lives. Autonomy celebrates the hardy individualism for which our country is famous. It emphasizes creativity and productivity while being the enemy of conformity. Autonomy requires that we choose who we wish to be and take responsibility for that.

In celebrating individuality and control of one’s self, however, too heavy a reliance on autonomy can isolate one from the community, from one’s family, and from one’s friends. While ultimately one is responsible for one’s self and one’s actions, the community can also be involved in an individual’s learning what his or her responsibilities are and can also set obligations that one needs to respect as one makes decisions. Thus, while autonomy is important, and plays a critical role in bioethics, it needs to be understood within the context of the community as well as other moral responsibilities that one may have. Moreover, many have pointed out the complexity of delivering health care in an increasingly pluralistic society. There are many different ethnic groups and religious groups that interact in the health care setting-both from professional and from patient perspectives. This situation raises the importance of cross-cultural bioethics and the challenges it poses.

One of the major issues in autonomy is known as paternalism. Generally speaking, paternalism involves some sort of interference with an individual’s liberty of action. Typically, a reference to the person’s own good justifies this interference. Paternalism may be active in that one acts on behalf of a person but not at their request. One may treat a person when they have not asked for such treatment. Or paternalism may be passive in that one refuses to help another achieve some goal they may have. For example, a physician may refuse to prescribe a tranquilizer because of her fears of its abuse by the patient.

James Childress, in his book on paternalism, identifies several types of paternalism that refine this general idea and indicate its different aspects.’

1. Pure and Impure. Pure paternalism bases its intervention into a person’s life on an appeal to the welfare of that person alone. This is the classic model in which parents tell children to eat spinach because it’s good for them. Impure paternalism justifies interference with another person because of the welfare of that person and the welfare of another. Thus, some argue that a parent who is also a Jehovah’s Witness should have a blood transfusion not only because of the good for that person, but also for the good of his or her children.

2. Restricted and Extended. A restricted paternalistic intervention is one that overrides an individual’s act because of some defect in the person. Thus, one may prohibit a child from doing something because of age-related or psychological incompetence. In extended paternalism, institutions or individuals restrain someone because what he or she wants to do is risky or dangerous. Thus, there are laws that mandate wearing helmets while riding motorcycles or seatbelts while in front seats of cars or when under ten years of age.

3. Positive and Negative. A positive paternalistic act, such as forcing a patient into a rehabilitation program, seeks to promote the person’s own good. A negative paternalistic intervention, such as taking cigarettes away from someone, seeks to prevent harm.

4. Soft and Hard. In a soft paternalistic act, the values used to justify the intervention are the patient’s values. For example, health care providers frequently remove unconscious or comatose patients from life support systems because those patients stated that preference in advance of being in that situation. In hard paternalism, the values used to justify an act are not the patient’s. This is the classic case of someone else knowing what is good for you and then having you do it or having it done to you.

5. Direct and Indirect. In direct paternalism, the person who receives the alleged benefit is the one whose values are overridden. The motorcyclist forced to wear the helmet is the one who assumedly will benefit if there is an accident. In indirect paternalism, one person is restrained so that another individual can receive a benefit. A classic instance is child abuse, in which authorities restrain parents in some fashion to benefit the child.

The desire to help someone or provide a benefit for someone runs deep within the human spirit. Also there are the specific obligations of nonmaleficence and beneficence that we discussed earlier in this chapter. Yet people are autonomous. They know their interests and what is important to them. Respect for persons mandates a presumption against paternalistic interventions. Yet, we see harm being done that we could prevent. Can we resolve these issues?

One argument for a paternalistic intervention includes these four steps:

1. The recipient of the paternalistic act actually has some incapacity that prevents or inhibits him or her from making a decision. The person is under undue stress, is a minor, or his or her judgment is impaired in some way.

2. There is the probability of harm unless there is an intervention. Here, one needs to determine if all harms are equal. Are physical, mental, or social harms interchangeable? Should we intervene regardless of how minor or major a harm could be?

3. There is a proportionality consideration. That is, the probable benefit of intervention outweighs the probable risk of harm from nonintervention. Here, one needs to be careful of uncritical interventions of extended paternalism.

4. The paternalistic intervention is the least restrictive, humiliating, and insulting alternative. This criterion argues that one remain as respectful of the individual as possible during the intervention.

This method will not resolve all issues connected with paternalism, but it will force individuals to recognize and justify such paternalistic interventions.”

Another major issue involving autonomy is informed consent. In fact, informed consent is, we think, one of the most critical problems in bioethics. Informed consent is a process where health care

professionals and patients discuss the value implications of treatments or clarify what is important for each of them in deciding on particular treatments or treatment plans. Consent negotiations allow discussions of issues of importance for all involved parties. Informed consent is not just a signed consent form. As a process, informed consent is the knowledge of and consent to a particular form of treatment before health care providers administer that treatment. Informed consent requires that several conditions be met in the process.

First, the patient must have the competence (or decision-making capacity) to make the decision.” A person may possess full competence in that the person is in control of his or her life; or, someone’s competence may be limited. A person may have decision-making capacities in one area but not in another. In other words, decision-making capacity is task specific. For example, someone may have the capacity to choose to color his or her hair purple, but that does not mean that person has the capacity to make an end-of-life treatment decision. An individual may not comprehend the value of money and may be restrained in its use but may be quite capable of making other decisions of daily living concerning nutrition, personal hygiene, or appointment making. Age may also suggest limited competence in that a person may be competent for some activities but not for others. Finally, and most problematically, one may be intermittently able to make decisions. That is, decision-making capacity fluctuates over time. This is especially true for patients in hospitals who receive consciousness- altering medications. Also, a person becoming senile may at times be competent, but at other times he or she may be unaware of the implications of his or her choices.

To help sort out the difficult issues of evaluating competence, experts have proposed three different standards. We will present them in order of increasing complexity. The first standard states that a person is competent when he or she has made a decision. When presented with a choice, the individual chooses an alternative. The fact of a choice is evidence of competence. The second is the capacity to give reasons for one’s choice. Competence here requires some process of justification, an articulation of why one made this choice. The third standard argues not only that a person should be able to give reasons for his or her choice, but also that this choice should be a reasonable one.

Each of these standards is different and raises a variety of value judgments. What is most critical is that individuals be aware of what standard of competence they are using and recognize that it may conflict with the judgments of others.

Second, the physician must provide adequate disclosure of the information necessary to make an informed decision. Disclosure refers to the content of what a patient is told during the consent process. Scholars have proposed two general standards for disclosure. The first, and more traditional standard, is the professional standard. What a person is told is what professionals typically tell patients. A professional fulfills the obligation to inform patients by telling a patient what one’s colleagues would tell that same patient. The obvious problem with this standard is that one’s colleagues may tell a patient little or nothing. That is, the professional standard may be simply to tell a patient as little as possible about his or her condition. In this situation, one may meet the standard and fulfill the obligation, but the patient remains ignorant.

Obvious problems with that standard led to the development of the more recent standard of the reasonable person. In this perspective, the health care provider is obligated to disclose what the reasonable person would want to know. One cannot fulfill the obligation by not saying anything; the

provider must communicate some information. The degree of specificity is centered outside the profession in the hypothetical reasonable person. Such a standard promotes autonomy and is protective of patients’ rights. Nonetheless it remains on a general level.

This level of generality is why we think it important to go further and determine what a particular patient wants to know. Such a standard of disclosure recognizes a patient’s right to be informed, but more importantly, it mediates that right with respect to the patient’s desires. Some patients may want to know nothing; others may want additional reading they can do. Only by determining what a particular patient wants to know can a professional respect and protect his or her rights.

Third, the patient must demonstrate comprehension of the information the physician disclosed. If a patient does not understand what the doctor has told him or her, there is no way that the patient can use the information. Comprehension presents many problems and may test the patience of health care professionals. Some may assume that patients simply cannot understand the complexity of the issues. Others may assume that patients do not comprehend unless they receive a mini-course in medicine. Moreover, some may assume that there is not sufficient time to inform patients fully.

One should note several issues here. First, from the fact that someone is not fully informed it does not follow that he or she is not adequately informed. Second, health care professionals have a professional language. While that language is appropriate for peer communication, it is inappropriate for communication with patients. Thus, professionals need to translate their terms and jargon so that it will be intelligible to others. Third, comprehension typically requires time, especially when what needs to be told is not good news. Being informed does not necessitate being told everything at once. Fulfilling the condition of comprehension requires sensitivity to what a patient can take in at one time.

Finally, patients need to provide informed consent voluntarily. A patient’s voluntariness refers to his or her ability to make a choice without being unduly pressured to make a particular choice by any specific person. Being free in making a decision means that we own the decision, that the decision is ours, that we have chosen the option. Nevertheless, it seems clear to us that no decision is ever made without some constraints or pressures. No one chooses in a vacuum or in the absence of values or experiences. The moral issue is to remove as much coercion or undue influence as possible so that the decision is the individual’s and not someone else’s.

Coercion and undue influence refer to two different realities. On the one hand, coercion refers to the use of an actual threat of harm or some type of forceful manipulation to influence the person to choose one alternative rather than another. Coercion may take physical, psychological, or economic forms. The nature of coercion is perhaps best captured in the widely quoted phrase from the movie The Godfather: “I made him an offer he couldn’t refuse.” This connotes the illusion of choice (made an offer) but, in effect, forecloses all options but one (the one that can’t be refused). On the other hand, undue influence refers to the use of excessive rewards or irrationally persuasive techniques to shortcircuit a person’s decision-making process. Thus, one may use behavior modification techniques to get someone to agree with one’s decision. One may offer large cash payments or the promise of benefits to induce people to participate in research that has a high risk. In either case, the appeal is not to a person’s interests, rights, or values. The purpose of coercion or undue influence is to change how the patient views a choice or judgment so that the patient will do what he or she might not ordinarily have done.

Rights

Commentators frequently use the term rights in ethics and bioethics. Yet the term is problematic because of its varied meanings and different connotations. This problem is evident even in the origin of the term rights. In the medieval ethical tradition, we do not find the term rights; rather, we find the term duty. The term duty referred to the reciprocal obligation members of a community had to one another. Duties were specific ways in which each helped the other realize the common good of all. In the modern tradition, beginning with the Enlightenment, rights referred to claims of the individual against the state. Rights were a means of carving out a zone of privacy or protection against the everincreasing powers of the state. Thus, the term rights has two major historical origins and two different connotations.

To begin, there are at least two different kinds of rights: moral and legal. One kind of right is a moral right. Ethical arguments form the basis of moral rights, which exist prior to and independent of the guarantees of any institution. Frequently moral rights are rooted in the nature of the person and his or her dignity and are, therefore, understood to be universal and inalienable. Another kind of right is a legal right. Here, civil laws, constitutions, or political institutions of a particular country or political unit spell out legal rights. Legal rights are only those rights granted to citizens by the government. They are specific to particular cultures and are subject to social qualifications. There are two types of legal rights: positive rights and negative rights. A positive right is a claim to a positive action on the part of another person. A positive right entails a duty on the part of someone else to do something. For example, the right of informed consent confers an obligation on the part of a health care professional to tell the patient relevant information about the patient’s diagnosis and treatment options. A negative right establishes an obligation for someone to refrain from action. Negative rights establish obligations of noninterference. The legal right to abortion, for example, does not secure an obligation for someone to perform an abortion, rather only that no one can interfere with a woman who is seeking an abortion.

Next, rights have different content. First, some think of rights as privileges, or social goods, that go beyond routine moral obligations. Second, others think of rights as a sort of social immunity, a protection from powers of the state. Third, some see rights as powers or capacities to act in society. Fourth, many see rights as entitlements. Entitlements are social responses that we see as deserved; they are derivative from being a member of a society. Finally, some see rights as claims or moral demands made on someone or on society.

One of the most difficult problems in rights theory is establishing who is the subject of a right and on what basis. Animal rights activists argue, for example, that to have rights one need only be able to feel pain or to be sentient. Others would suggest that consciousness is enough to secure rights. Still others argue that only self-consciousness can secure rights. Another suggestion is that one be able to use language. This of course presents interesting issues with respect to chimpanzees or gorillas who have been taught sign language as well as with other animals who appear to have some sophisticated form of communication. Finally, others make the argument that only persons are bearers of rights. Persons are generally understood to be moral agents with an enduring concept of self and capable of autonomous actions.

The concept of patients’ rights is one whose time has come. Historically, patients have had a

passive role in their treatment. Often they were told little, if anything, about what was happening. Sometimes they were not informed about their diagnosis or various treatment options. We saw this phenomenon under paternalism. The motivation for this was not malevolence or ill-will toward patients. Rather, many saw such concealment as a way of protecting patients or a way of not harming them. Why add the burden of bad or discouraging news to the already debilitating effects of the disease?

However, this practice is slowly being reversed. Consumers are becoming less afraid of experts and are informing themselves. We recognize, for instance, that expertise has its limits.” Many have accepted the practical philosophy that an informed patient is a more cooperative patient. More people are assuming responsibility for their health through various programs of prevention. Finally, there have been a number of lawsuits that have forced changes in the process of informing patients of their diagnosis and prognosis.

A very important development in bioethics regarding rights is the patient rights movement. The development of the field of health care ethics and the pursuit of several rights in the courts have helped specify many rights in health care. The American Hospital Association (AHA) and the American Civil Liberties Union (ACLU) developed rights statements, too.’6 Finally, federal regulations specify some rights related to treatment and research. Let us survey some of these rights as a preview of what we will see in upcoming chapters.

The right to information. Probably the most critical right is the one to information. If one is ignorant of one’s situation, one cannot exercise options, cannot make plans, and cannot take control. Access to and possession of information are the bases for exercising autonomy. If health care providers deny the patient relevant information, then he or she will remain a victim of paternalism.

The right to access hospital records. One particular expression of the right to information is the right to access one’s hospital records. Thus, two questions frequently present themselves: (1) Can a patient see his or her record? and (2) Who besides the hospital or physician has access to the record? In the past, patients often were not allowed to see their records. This was part of the general practice of providing little information to patients. In addition, the records contained technical information that patients might be unlikely to understand. As the right to information and consent gained more acceptance, so did the right to access to one’s records. Again, the argument is that one cannot exercise autonomy if one does not have knowledge.

The issue of who else can see records is a complex one. The Food and Drug Administration (FDA) and pharmaceutical companies have an interest in seeing patients’ records to understand how new drugs work. Researchers want to examine records to understand disease patterns, causes of diseases, and differences among populations. Insurance companies want to know their clients’ health status. The problems of privacy and confidentiality are thus complex and serious, especially when there are valid, competing public interest reasons for gaining access to patients’ health records. In 1996, the Health Insurance Portability and Accountability Act (HIPAA) began to shape the access to, exchange of, and protection of patients’ health information. HIPAA is now a major component of hospital compliance requirements and scopes out the limits to disclosing patient information.

A third problem, one whose magnitude is coming into focus, is that of electronic patients’ records.

As part of the shift to computers, health care professionals routinely enter patients’ records on hospital computers. The primary advantage is that physicians and others involved in patient care have direct and easy access to their patients from anywhere in the hospital-or possibly anywhere else they have Internet access. A key issue is how to prevent inappropriate and unauthorized access to these records. The standard strategy of passwords to gain access to the system is fine as far as it goes. Likewise, encryption has its limits. The problem, as we so well know, is that those strategies might not go far enough. Thus, a critical problem for hospitals is devising secure strategies to safeguard patients’ privacy.

The right to privacy. In light of the right to information, there is also a right to privacy, which is to be protected by professional confidentiality. Privacy, confidentiality, and the protection of information gained during the professional-client interchange are extremely important. If one cannot assure confidentiality, then people may not seek help, the basis of a trusting relationship may be destroyed, and a patient’s position in society may be jeopardized. Such issues frequently arise in teaching hospitals, where many individuals are privy to cases because health care professionals need to discuss them with one another and because they examine patients’ records as part of research protocols.

The right to refuse treatment. If one has the right to give informed consent to treatment, by implication one also has the right to refuse treatment. Again, such a refusal is an exercise of autonomy and a means whereby the patient exercises the right of self-determination. This right has received strong legal and ethical support. It is the right that causes the most difficulties, however. Health care professionals find it difficult to stop treating their patients for both personal and professional reasons. Families may not understand why a member does not want a particular treatment. Society may not accept a particular religion’s position on medicine. Thus, the good of the individual and the good of society frequently stand in tension.

The right to voluntary participation in research. The right to refuse treatment is also understood as a right to voluntary participation in research. This area is the one in which the most protection of rights is expressed. There is ample ethical argumentation, legal precedent, federal regulations, and institutional support to ensure that researchers recruit potential subjects and adequately inform them before enrolling them in a research project. The primary issue here is the protection of the human research subject. The right of consent is seen as the medium between the social desire to protect individuals and the need of science to discover cures for diseases.

To some, the patients’ rights movement may seem like an antimedicine or antiphysician movement. In a way, this may be correct. Many resent the status and privileges of physicians. Many harbor grudges against physicians. As in all movements, some of the motivation may be misplaced.

But, it is also clear that patients traditionally have been relegated to a passive and/or secondary role. Frequently, physicians and others involved in health care have totally removed the patient from the decision-making process. An emphasis on patients’ rights seeks to correct this omission and to ensure that the values and rights of patients occupy their rightful place. This will obviously create problems and cause tension, but as both physicians and patients become used to occupying different roles, perceptions and expectations will change and tensions will decrease.

The contribution of the rights movement in medicine has been to place patients within the decision- making process. As in all other areas of life, time is necessary to learn how to exercise these rights, to redefine relationships based on these rights, and to restructure the physician-patient relationship. As long as both physicians and patients recognize that the purpose of the discussion of rights is to ensure a better ethical standard in medicine, they can enter into the discussion and practice of rights in medicine as a joint enterprise.

CONCLUSION

Now that we have introduced you to the various ethical theories and terms used in bioethics, we will turn our attention to specific topics. We will examine topics ranging from the beginning of life (e.g., abortion) to the ending of life (e.g., euthanasia), and almost everything in between. In all of these topics, we encourage you to apply the theories and terms in this chapter as you formulate your own positions on the questions at hand.

DISCUSSION QUESTIONS

1. Why is the concept of informed consent so important? What functions does it perform for both patient and health care professional?

2. What method of allocation of resources seems most just to you?

3. Do you think people should have the right to refuse treatment? Can you justify treating someone against their will?

4. Which do you think are more important, moral rights or legal rights?

5. Who do you think should have access to your health records?

6. When there is disagreement over how to treat a patient, whose decision should take priority?

NOTES

1. Albert R. Jonsen, The Birth of Bioethics (New York: Oxford University Press, 1998), 352-76.

2. See Richard M. Gula, Reason Informed by Faith: Foundations of Catholic Morality (Mahwah, NJ: Paulist Press, 1989), 283-99.

3. Axiology is the study of values.

4 See National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, “The Belmont Report,” in Source Book in Bioethics: A Documentary History, ed. Albert R. Jonsen, Robert M. Veatch, and LeRoy Walters (Washington, DC: Georgetown University Press, 1998), 22-28.

5. See Tom L. Beauchamp and James E. Childress, Principles of Biomedical Ethics, 5th ed. (New York: Oxford University Press, 2001).

6. Beauchamp and Childress, Biomedical Ethics, 225-82.

7. For example, see Norman Daniels, Just Health Care (New York: Cambridge University Press, 1985).

8. Daniel P. Sulmasy, “Dignity and the Human as a Natural Kind,” in Health and Human Flourishing: Religion, Medicine, and Moral Anthropology, ed. Carol R. Taylor and Roberto Dell’Oro (Washington, DC: Georgetown University Press, 2006), 71-87.

9. Beauchamp and Childress, Biomedical Ethics, 113-64.

10. Ibid., 165-224.

11. Ibid., 57-112.

12. James F Childress, Who Shall Decide? Paternalism in Health Care (New York: Oxford University Press, 1982).

13. James F. Childress, Priorities in Biomedical Ethics (Philadelphia: Westminster Press, 1981), 27.

14. Here, we use these terms interchangeably, but we recognize that there is a difference between them. Competence tends to refer to a legal designation; decision-making capacity, or decisional capacity, tends to refer to a medico-moral reality. As a legal term, competence may reflect an overarching category of a person who can make decisions legally. Decision-making capacity is very specific to the task and time of a particular decision.

15. See Robert Veatch, “Generalization of Expertise,” The Hastings Center Studies 1, no. 2 (1973): 29-40.

16. For a copy of the AHA’s Patients’ Bill of Rights, see Martin Benjamin and Joy Curtis, Ethics in Nursing (New York: Oxford University Press, 1981). For the ACLU position, see George Annas, The Rights of Patients: The Basic ACLU Guide to Patient Rights, 2nd ed. (Carbondale: Southern Illinois University Press, 1989).

BIBLIOGRAPHY

Annas, George. The Rights of Patients: The Basic ACLU Guide to Patient Rights. 2nd ed. Carbondale: Southern Illinois University Press, 1989.

Ashley, Benedict M., Jean K. deBlois, and Kevin D. O’Rourke. Health Care Ethics: A Catholic Theological Analysis. 5th ed. Washington, DC: Georgetown University Press, 2006.

Aulisio, Mark P., Robert M. Arnold, and Stuart J. Youngner, eds. Ethics Consultation: From Theory to Practice. Baltimore, MD: Johns Hopkins University Press, 2003.

Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. 5th ed. New York:

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Beauchamp, Tom L., LeRoy Walters, Jeffrey P. Kahn, and Anna C. Mastroianni. Contemporary Issues in Bioethics. 7th ed. Belmont, CA: Thomson Wadsworth, 2007.

Benjamin, Martin, and Joy Curtis. Ethics in Nursing. New York: Oxford University Press, 1981.

Cahill, Lisa Sowle. Bioethics and the Common Good: The Pere Marquette Lecture in Theology, 2004. Milwaukee, WI: Marquette University Press, 2004.

. Theological Bioethics: Participation, Justice, and Change. Washington, DC: Georgetown University Press, 2005.

Cavanaugh, T. A. Double-Effect Reasoning: Doing Good and Avoiding Evil. New York: Oxford University Press, 2006.

Childress, James E Who Shall Decide? Paternalism in Health Care. New York: Oxford University Press, 1982.

Priorities in Biomedical Ethics. Philadelphia: Westminster Press, 1981.

Daniels, Norman. just Health Care. New York: Cambridge University Press, 1985.

Eckenwiler, Lisa A., and Felicia G. Cohn, eds. The Ethics of Bioethics: Mapping the Moral Landscape. Baltimore, MD: Johns Hopkins University Press, 2007.

Engelhardt, H. Tristram. The Foundations of Bioethics. 2nd ed. New York: Oxford University Press, 1996.

Farber Post, Linda, Jeffrey Blustein, and Nancy Neveloff Dubler. Handbook for Health Care Ethics Committees. Baltimore, MD: Johns Hopkins University Press, 2007.

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INTRODUCTION

When the United States Supreme Court decided Roe v. Wade in 1973, few foresaw the impact it would have. In a 2006 report, Abortion in Women’s Lives, the Guttmacher Institute reports that approximately 1.3 million abortions occurred in 2002 in the United States, though there have been some fluctuations in the rate during the last several years.’ According to 2003 Center for Disease Control and Prevention (CDC) data, women 20-24 years old procured about 33 percent of all induced abortions for which providers adequately reported age; however, adolescents (aged 15 years or younger) had the highest abortion ratios (proportion of pregnancies that ended in induced abortion): 830 abortions per 1,000 live births.’ In addition, protests at abortion facilities have escalated, and opponents of abortion have attacked and murdered both physicians and staff of these clinics. The social, legal, and moral debate over abortion continues to be one of the most divisive in our country’s history.

This debate has only sharpened over the last few years as it continues to press on and shape electoral politics at all levels. Proor antiabortion debates are part of national party platform debates and, more and more frequently, a litmus test for various offices, including the presidency as well as federal and state legislative seats. Nominations for the Supreme Court are continually predicated on the candidate’s position on abortion.

Religion remains an important part of the abortion debate, though in ways both strange and interesting. Catholic and Protestant women have abortions at about the same rates. Yet, Catholics and Protestants are both as likely to disapprove of abortion. According to James Kelly, a majority of Americans “do not approve of abortion for non-medical reasons,” yet fewer “than ten percent of the 1.6 million abortions obtained each year are performed for reasons of health, rape or incest.”‘ Ironically, “many more Americans will describe abortion as immoral than will support laws directly prohibiting it.”‘ The way Kelly, a sociologist, summarizes the findings of two public opinion polls is as follows:

The good news was the continuing strong moral repugnance most Americans have toward abortion. The bad news was the public’s rather lukewarm view of the right-to-life movement. The uncertain news was how best to translate the widespread moral disapproval rate of abortion into wise laws based on both principle and consensus.’

Varying issues of the abortion debate are put into sharp relief by a case in Nebraska. In 1994, “when a 15-year-old girl told her parents, her 16-year-old boy friend and his parents that she was pregnant, she and her family expected that the decision whether to continue the 23-week pregnancy would be theirs to However, the girl’s boyfriend and his parents invaded her family’s house, and the girl was taken away “in the middle of the night by law-enforcement officers determined to stop her from having an abortion; she was put into foster care, and, finally, she was ordered by a judge not to abort the pregnancy.”‘ The teenager eventually gave birth to a daughter and raised the child in her parents’ home. The family, however, relocated because of the harassment they received.

This case brings together many elements in the abortion debate: teen sexual activity, the legal rights of the two teenagers, the legal status of a twenty-three-week-old fetus, parental rights over their children, the consent process for obtaining an abortion, the use of law enforcement officers and the judicial system to implement the law and/or perceptions of it, the question of the extent to which restraints relating to location, diet, and activities can be imposed on women during pregnancy, and perceptions about the use of violence in attempts to prevent abortions.

Regardless of the appropriateness of any resolution of this case, significant harms occurred to all parties involved, prejudices of all sorts were reinforced, lives were changed, and the social fabric of a small town was torn. In various ways and in different circumstances, personal and moral traumas continue to recur with profound personal and social consequences but with seemingly few resources for resolution.

LEGAL DIMENSIONS

Abortion legislation has covered a lot of ground since the laws of the 1800s when the test for pregnancy was quickening and abortions were prohibited only after quickening.’ The abortion laws that came in the mid-1800s served two functions: (1) to establish greater control over the growing field of medicine and (2) to control the kind of preparations used to procure abortions. In effect, some of these laws were poison control laws. In the late 1800s and early 1900s, there was a major shift in who was obtaining abortions. Typically, on the one hand, immigrants had the highest use of abortion. But as their lot improved, many more gave birth. On the other hand, the women of the new native Americans (i.e., descendents and relatives of the colonists and settlers) were turning to abortion as a contraceptive, and the population of this group began to decrease. Many of the abortion laws passed during this time were a consequence of a nativist backlash that feared that the immigrants would outnumber the new native Americans. Finally, the restrictive abortion legislation of the early and midtwentieth century reflected a broad coalition of physicians, clergy, and the population who argued that abortion should be prohibited except for clearly defined and controlled medical circumstances, typically related to the health of the mother.

The legal debate on abortion continues through an ongoing challenge to nominees for membership on various courts and a constant stream of cases to test the legal right to an abortion. At least fourteen major cases have been before the Supreme Court. While legal cases challenging Roe v. Wade have not succeeded in overturning it, the discussions on this right by the Supreme Court justices has grown more rancorous and rigid, and judges and legislators are drawing the right to abortion more and more narrowly.’

Roe v. Wade, decided on January 22, 1973, dramatically catalyzed the abortion debate. This case struck down a Texas statute that made it a crime to procure or attempt an abortion except on medical advice for the purpose of saving the mother’s life. This decision struck down all similar legislation in all other states. Thus, the decision in Roe v. Wade decriminalized abortion on the grounds that the right of privacy was broad enough to include a woman’s decision to terminate her pregnancy. The decision also included the statement that the fetus was not a person in the sense intended by the Constitution. Ironically, in August 1995 Norma McCorvey, the “Jane Roe” of the case, joined Operation Rescue, a militant antiabortion organization. McCorvey, however, contrary to Operation Rescue, still believes in a right to a firsttrimester abortion.

The second major case was Planned Parenthood of Central Missouri v. Danforth, issued on July 1, 1976. This ruling declared unconstitutional two sections of Missouri abortion law. First, the state could no longer require the consent of the spouse for a firsttrimester abortion. Since the state does not have this power, neither does anyone else. Second, parents or guardians of women under eighteen may not prohibit them from obtaining an abortion. Three reasons were given for this. First, as above, the state cannot grant to others what it itself does not have. Second, minors too have constitutional rights. Third, the state should not give parents the power to overrule a decision made by a young woman and her physician, for, in the judgment of the Court, this would neither strengthen family bonds nor enhance parental authority.

The third major decision was Beal v. Doe, issued on June 20, 1977. This decision resolved a practical point but set off other debates. In this decision, the Court held that states participating in the Medicaid program were not required to fund nontherapeutic abortions. Title 19 of the Social Security Act gives participating states broad discretionary powers in determining the extent of the medical assistance they need to provide to Medicaid recipients. The only requirement is that the standards be reasonable and consistent with the goals of Title 19. It was argued that nontherapeutic abortions were not necessary medical services and, therefore, that a refusal to fund them is not inconsistent with the aims of Title 19.

A fourth major case, Bellotti v. Baird, decided on July 2, 1979, dealt with minors and abortion. The decision argued that every minor ought to have the opportunity to go to court without the prior consent of her parents. If the court determined that the minor was mature, it could authorize her to act without her parents’ permission. If immature, she may show why the abortion is in her best interest, and the court can then authorize the abortion without prior permission of the parents. Also, the court may deny an abortion to a minor in the absence of parental consultation if the court judges that to be in her best interests.

Decided on July 3, 1989, the case of Webster v. Reproductive Health Services was critical for several reasons. First, a Missouri law that banned the use of public hospitals or clinics for the provision of abortion was upheld. Second, the center of the debate shifted from the Supreme Court to state legislatures as appropriate loci for the legal debate. Third, in light of the decision, concurrences, and dissents, there was an indication that a majority of the Supreme Court members no longer held abortion to be a fundamental constitutional right.

In the 1990 cases of Hodgson v. Minnesota (decided on June 25, 1990) and Ohio v. Akron Center for Reproductive Health (also decided on June 25, 1990), parental notification by minors was

addressed again. According to Hodgson, the state may require that a teen notify both her parents prior to an abortion, as long as there is an alternative of a judicial hearing. In Ohio, the notification requirement was limited to one parent. According to the Guttmacher Institute, thirty-five states require some form of parental involvement in a minor’s decision to procure an induced abortion.”‘ Parental involvement can mean consent, notification, or both.

Decided on June 29, 1992, the case of Planned Parenthood v. Casey was important in that the Court affirmed the core of Roe but permitted some regulation of abortion by the states. While this relieved the fears of a total reversal of Roe that some had as a result of Webster, nonetheless a tendency to further restrict that right seems to be clearly established.

In 2003, Congress enacted the Partial-Birth Abortion Ban Act, which proscribes a specific method (i.e., dilation and evacuation) of abortion when certain anatomical parts of the fetus (i.e., landmarks; e.g., the head or, if breech, the navel) are outside of the mother. Though this ban includes abortions both pre-viability and post-viability, the act does not regulate the procedures most often used in first- trimester abortions. On April 18, 2007, the U.S. Supreme Court decided Carhart, which determined that the Partial-Birth Abortion Ban Act was not unconstitutional (as had been challenged in Carhart). The Court held that the act did not impose an undue burden on a woman’s right to abortion; the act also seems to strike a balance, argued in Casey, to protect the woman’s right to choose and the government’s interest in protecting fetal life. State laws continue to be important regarding bans on partial-birth abortions because they may impose stricter penalties and provide for local control in the prosecution of physicians.”

These cases set the tone for future legal debates and court decisions for the next decades. We have a different Court, and new cases are being presented to it. In addition, the age of several justices on the Supreme Court is yet another factor in the abortion debate. When they resign, who appoints their replacements, and what a newly constituted Court decides will have yet another significant impact on the abortion debate. In addition to the woman’s right to choose and the government’s interest in protecting the health and life of the mother and fetus, state laws address physician and hospital requirements (e.g., when must a physician perform an abortion in a hospital), gestational limits and “partial-birth” abortions, use of public funding for abortions, coverage by private insurance, refusal to participate in abortions by health care providers, mandated counseling, waiting periods prior to induced abortion, and parental involvement. The legal issues notwithstanding, the morality of abortion is not resolved through these discussions.

ETHICAL ISSUES IN ABORTION

The Sanctity of Life

A major element in the abortion debate is the concept of the sanctity of life. This phrase is a shorthand way of referring to the value of life and its inherent preciousness. Whether the value of life is external, in the sense that life is a gift from the Creator, or internal, in that the person is an inherent center of value, the concept is an important one in thinking through the abortion dilemma.

The concept of the sanctity of life is simple in its statement but complex in its explanation. The concept begins with an affirmation of the beauty and richness of biological life itself. This reflects the

orientation of the Franciscan theologian Bonaventure, who affirmed that creation contained the footprints of God. That which was created mirrored its Maker and, because of that, was precious.

Furthermore, when that life is expressed in personal form, it takes on a new sense of mystery and value. On the one hand, following the thought of Pierre Teilhard de Chardin, we can say that personal life is when creation becomes conscious of itself. In the person, creation is able to be aware of itself, to experience itself, to know its source and destiny. On the other hand, the distinctively human traits of intellect and will reflect what is traditionally called the image of God within the person. That is, the capacity to understand and choose reflects qualities of the divine conferred upon us in our creation. Such is the dignity of personal life: one can determine who one is and what to do and freely commit oneself to that project.

For many, such dignity is present in all members of the human species from the moment of their first existence. All members of the human species begin with the potential to express and experience personal life. What is critical in this orientation is the capacity for such development, not the actual development itself. Such capacities are not accidental to the person, but are constitutive of the essence of that person. Thus, even though such potential may not be actualized-because of genetic disease or some intrauterine trauma-such an individual is still valued because of his or her possession of life and the essential capacities of personhood.

Thus, according to the viewpoint of sanctity of life, possession of life and distinctively human capacities confer upon individuals an inherent value and dignity. Many affirm the innocence of such individuals. Given their initial level of personal development, they are not yet morally responsible. In addition, these individuals are helpless and are dependent on others for their very existence. Such absolute innocence and dependence requires, in the judgment of many, absolute protection. Only such absolute protection can be a true expression of the appreciation of the value of life.

Finally, part of the sanctity-of-life discussion is thinking about how one relates the issue of ending life in abortion to ending life in other situations. Many secular and religious ethical theories permit or promote killing in some circumstances: for example, self-defense, defense of private property, war, or capital punishment. Here the value of life-the sanctity of life-is balanced against other important values: personal bodily integrity, the right to keep what is one’s own, democracy, freedom, the security of society. The moral issue frequently is not whether we may kill, but under what circumstances killing is permitted.

Some respond to this situation by total pacifism, by prohibiting any killing or violence in any fashion in any circumstances. Others set up categories such as the just war theory that help define a narrow range of circumstances in which killing is permitted. Others declare certain kinds of killing off-limits: abortion and direct euthanasia. Each solution brings certain problems to its resolution of the moral problem of killing, but each also does its best to promote the sanctity of life.

Who Is a Person?

A major part of the abortion debate has been the questions: Who is a person? and By what criteria can we know this? The answers to these questions obviously have a significant impact on the moral evaluation of the fetus. Daniel Callahan, in his classic study of abortion, identifies three basic

orientations to person hood: the genetic school, the developmental school, and the school of social consequences.12

The genetic school defines a human person as any being that has a human genetic code. This orientation would argue that personhood comes with the setting of the individual’s genetic code at fertilization. Further growth and development are simply spelling out the implications of the genetic code for this particular individual. A problem with this perspective is that it identifies the person with the genetic code and is open to the charge of genetic determinism.

The developmental school holds that while the establishment of the genetic code constitutes the basis for further development, some degree of development and interaction with the environment is necessary for someone to consider such a being as a full human person. This orientation suggests that one’s genetic potential is not fully actualized until there has been interaction with the environment. This understanding of person includes more than the biological dimension. A problem with this perspective is trying to identify and gain consensus on what this more-than-biological dimension might be.

The third orientation is the school of social consequences, which dramatically shifts the focus of the question. This orientation departs from the biological and developmental elements and focuses on what society sees as valuable for personal existence. This school first determines what kind of persons are wanted by society and then sets the definition in accordance with that. The desires of society, expressed in public policy, take precedence over the biological or developmental aspects. A problem here is that history, both ancient and contemporary, reveals severe negative consequences for those who do not meet or fit criteria of social acceptability.

Another approach would look to what kinds of presuppositions are necessary so that one may talk of a person. That is, we can ask what are necessary, though perhaps not sufficient, preconditions for being a person. In this discussion, two critical biological markers play an important role.13

First, there is the establishment of individuality. While the genetic school is correct in stating that the completion of fertil ization establishes genetic uniqueness-unless of course one has an identical twin-such uniqueness does not establish individuality. Up until the time the process of restriction occurs-around two or three weeks after fertilization-the cells of the developing preimplantation embryo have a twofold capacity. They possess what is called totipotency: the capacity for any cell of the embryo to become any part of the body.14 In addition and related to this, a cell can be removed from the developing preimplantation embryo and have the capacity to develop into a complete organism. Equally important, the organism from which it was taken may not be harmed and itself may become a whole organism. That is, this is an organism that can be divided into parts, each of which can become a whole organism. This is a strong argument that this organism is not an individual. Therefore, it is necessary, though not sufficient, for an entity to be an individual before it can be a person. Such individuality begins at the time of restriction, when the cells of the organism become committed to becoming specific body parts.

Second, there is neurological development. Three stages of neural development seem important. The first occurs around the third week of development: the development of the primitive streak and the neural groove. This is the formation of the biological structure that will eventually become the

neural system. Second, around the twelfth week, the embryo can begin to respond to stimuli. The neural system is developed enough to carry a signal to the brain. Finally, around the twentieth week, the entire central nervous system is integrated, and the fetus is also capable of initiating an act. At the first stage of development, the embryo is not yet capable of consciousness because the physical development of the brain has not yet occurred. Similarly, the fetus is not capable of self- consciousness at the second stage because of the lack of integration of the entire neural system. Only with the central nervous system’s full integration do we have the physical conditions for what we could say are necessary, though not sufficient, presuppositions for personhood.

Yet another level of complexity comes from the growing accessibility of the fetus. Such accessibility through various monitoring devices such as amniocentesis and fetoscopy, fetal surgery, and the improvements of newborn intensive care units allow caregivers to experience the fetus as a patient. While some would argue that this is nothing new, our increased capacity to see and aid the fetus directly is a stronger basis for ascribing the status of patient than belief or ideology.

The questions then can be asked: If the fetus is a patient, might it also be a person? If this patient is not a person, then why treat-other than for the crassest of research motivations? If one experiences the fetus as being a person because of the status of being a patient, then what implications does that have for abortion? We are yet to face major dilemmas about the personhood of the fetus in light of the emergence of these new technologies and ways of seeing early human life.

Women’s Rights

The next issue involves the rights of women. Here, the issue reflects two aspects of autonomy: the reproductive liberty of women in particular and the liberty of women to have dominion over their bodies in general. In the former, one argues that women have a right to exercise their autonomy in human reproduction in any way they see fit. Thus, a woman can procure an abortion if continuing the pregnancy impinges on her reproductive liberty. Some might argue that this would be using abortion as a means of birth control, which may not be morally justifiable given other available alternatives (e.g., contraceptives, sterilization, and natural family planning). In the latter, a woman has a right to control and protect her body, even during a pregnancy. In this context, many have invoked different metaphors for viewing the fetus or embryo: a mere extension of the woman’s body, an intruder, an aggressor, or a parasite. In any case, the symbolic meaning behind these tends to support a choice to procure an abortion.

Life and Health of the Woman

Many commentators support the claim that a woman can procure an abortion for therapeutic reasons. What constitutes “therapeutic,” however, is subject to much debate. Should thera peutic abortions be restricted to only those that pose an imminent and physical threat to the life or health of the woman? Should it be allowed only when there is a threat to her life? Or, should other burdens be considered? For example, mental anguish or financial distress? Although it may be rare, if a woman were to become pregnant following a sexual assault, could an abortion be seen as therapeutic if the child represents a constant reminder of the physical and emotional trauma the woman suffered?

A classic scenario to demonstrate this point, without involving the psychosocial aspects of rape, is

the ectopic pregnancy. An ectopic pregnancy occurs when the developing embryo implants into the fallopian tube rather than the uterus. Thus, if the embryo continues to develop, it will rupture the fallopian tube and ultimately result in the death of the woman and the fetus. In this situation, the choices-allow the embryo to gestate or procure an abortion-present a true dilemma: neither option is really desirable (i.e., death of both embryo and woman or death of the embryo, respectively). Moralists have applied the Principle of Double Effect in these cases to justify the removal of pathological tissue (the fallopian tube) even if the death of the embryo is a foreseen consequence. Contemporary debates about this principle and its application to ectopic pregnancy involve concerns over what constitutes “pathological tissue” and therefore what is a direct or an indirect abortion. This specific debate has been renewed as other treatments have become the standard of care; physicians now treat most ectopic pregnancies without needing to remove the fallopian tube.

Health and Viability of the Fetus

Conversely, some may argue that a “therapeutic abortion” is justifiable when the fetus has a condition that indicates it will have a poor quality of life or that its condition is “incompatible with life.” Here, the abortion is more preventative than therapeutic: it prevents a person from existing with a condition. On the one hand, some claim there are clear-cut medical conditions that warrant the termination of pregnancy. An example is anencephaly, when the fetus grows without a cerebral cortex and an incomplete cranium. Often, these fetuses gestate to term alivethat is, with functional hearts and lungs-but die soon after birth. Thus, one might argue it is better for one to terminate a pregnancy than to bring a child into the world who may suffer or eventually die shortly after birth (in the process, using expensive medical resources). On the other hand, some worry that more moderate medical conditions might lead a couple or a woman to procure an abortion: for example, severe mental retardation. The worry becomes how severe the mental handicap must be to warrant an abortion. In addition, does such a decision to procure an abortion reflect a greater social problem with how one sees the already living mentally handicapped or disabled? If such abortion practices become widespread, could this lead to an erosion of rightrelationships with those who are differently abled?

The Role of Men

Although women shoulder the significant portion of the burden when it comes to pregnancy and choices for abortion, many wonder how men should respond, support, or react to the issues in abortion. What role, if any, should the man responsible for the pregnancy play in the decision-making process to procure an abortion? After all, did he not contribute to the situation too? Outside of sexual assault, men may have some legitimate say in the decision-making process. Many argue, however, that because pregnancy (and therefore abortion) involves a woman’s body, the ultimate decision does and should rest with her. Nevertheless, how seriously should she consider the concerns of the man? Does excluding men from the decision-making process, or even from the conversations about the options, reflect a deeper sexism about pregnancy and childbearing that perpetuates social roles of men and women that may result in unjust distribution of burdens?

The Role of Parents

Likewise, many argue that parents of pregnant minors should have a greater role to play in decisions regarding abortion. On the one hand, many claim that minors are too young to make such

decisions (i.e., procuring abortion or carrying a pregnancy to term)-let alone the decision to give the child up for adoption or to raise the child. Even though minors may be able to have sex and get pregnant, they may not fully comprehend the significance of those acts or their consequences. Moreover, commentators worry that if minors can obtain an abortion without giving notice to their parents, then this may isolate minors and further undermine family relationships. On the other hand, some argue that forcing minors to tell their parents, even if parental consent is not required, may cause the minor to seek risky abortions from those who are not licensed or-worse-they may try to perform the abortion themselves. States vary with regard to parental involvement. Some require the consent of one or both parents before the minor can obtain the abortion. Other states do not. Some states only require that one parent be notified of the minor’s intent to procure an abortion. In the end, premature sexual activity, teenage pregnancy, and the tragic situation of being ill-prepared to raise a child or of choosing abortion are enough to give parents and minor children pause and, hopefully, to engage in open and fruitful dialogue about the various aspects of human sexuality.

Nonsurgical Abortions: The Case of Mifepristone

A critical development in the abortion debate has been the introduction of Mifepristone in the mid- 1980s and its use since.’ One major problem is what to call this: an abortion, a contraception, or-as the developers of Mifepristone preferred-a contragestation. According to the American College of Obstetricians and Gynecologists, a pregnancy occurs when the conceptus (i.e., developing embryo) implants into the uterine wall. Thus, the medical community generally views drugs that induce abortion to be those that interfere with gestation after implantation. Any drug that prevents implantation or fertilization is considered contraceptive. Some religious thinkers, however, hold that any drug that causes the demise of the conceptus before or after implantation is abortifacient (i.e., causes abortions). Any drug that prevents fertilization is contraceptive (i.e., prevents conception).

According to the Food and Drug Administration (FDA), Mifepristone works by blocking the hormone progesterone, which is necessary for pregnancies to continue. The drug effectively prevents or interferes with the embryo’s implantation in the uterine wall, which results in the uterus reacting as it would at the end of a normal menstrual cycle. Occasionally, in smaller doses, one can use Mifepristone as an emergency contraceptive. However, the FDA approved levonorgestrel in August 2006 as an over-the-counter drug for emergency contraception.”

Regardless of how one describes Mifepristone, its introduction significantly changes many elements in the abortion debate: there is a shift from surgical to chemical abortions, there is a shift from abortion in clinics to physicians’ offices, and there is a decrease in the cost of abortion. There is a decrease in morbidity and mortality rates in abortions. But most importantly, there will be a shift from public to private in that no one will know if the woman is going to visit a physician for a routine visit or for Mifepristone.

Another concern with the routine use of Mifepristone is that if it continues to show that it is safe, effective, and inexpensive, then it could become a primary means of birth control. That is, its availability could simply be the basis for replacing traditional means of birth control. Such a shift could lead us into thinking that abortion is a value-neutral event and could further erode the moral dimensions of the debate.

Finally, reliance on Mifepristone may shift the burden of birth control and regulation even more fully to women. If it is perceived-and the key word is perceived-that a pill will solve “the problem,” then we suspect that even more men might disavow their responsibilities in reproductive control. Thus, reproductive control will remain a woman’s issue rather than a couple’s issue.

THREE POSITIONS ON ABORTION

When all is said and done, there are three basic orientations to abortion: the conservative, the liberal, and the moderate.” The conservative position holds that under no circumstances may anyone perform an abortion. The religious and philosophical reasons for this include: the sanctity of life, the inviolability of innocent human life, and the fear of the social implications of a liberal abortion policy for other defenseless people such as the handicapped and the elderly.

The liberal position would allow abortion under many different circumstances. Many individuals assume a broad range of moral justifications. The liberal position tends to be more accepting of the so-called soft reasons for abortion: the quality of life of the fetus, the mental health status of the woman, her rights to bodily integrity, the welfare of the existing family, career considerations, and family planning.

The moderate position seeks a middle ground that recognizes the moral legitimacy of some abortions, but never without suffering and pain on the part of both the woman and the fetus. This position sees both the fetus and the woman as having rights and entitlements and recognizes that attempts to resolve such conflicts of rights will entail suffering and pain. Thus, while acknowledging the moral acceptability of some abortions, the moderates do so only with a sense of great tragedy and loss. Frequently, this position would limit a consideration of abortion to so-called hard indications for abortion: the health or a deformity of the fetus, risks to the life of the mother, rape, and incest.

TWO WORLDVIEWS

Gregory Baum identifies the cause for the profound disagreements and moral conflicts presented in this chapter as rooted in radically different worldviews on nature and sexuality.’ The first worldview sees sexuality and reproduction as part of nature. Divine providence defines sexuality as having a primarily biological function that, while being pleasurable, is intrinsically related to reproduction. Since nature is defined and watched over by the Creator, interference in that order through artificial contraception or abortion is a violation of that order. Such an orientation would typically be conservative on the abortion question.

The second orientation sees God’s providence expressed, not in a static understanding of the biological order, but rather as gracious action within human history that enables people to take more responsibility for themselves and their environment. Sexuality is more than biology; it is a personal act and a human reality with many dimensions. Contraception is a means of exercising responsibility, not violating a biological order. Abortion becomes a moral possibility in this perspective.

Such differences in worldview cannot explain all differences between people. They can help reveal, however, why people disagree so much. They begin at different points, and they may be unaware of this until they are pushed back to some basic perspective. Thus, the most profound area of

disagreement may be not over how to resolve a specific moral issue such as abortion, but over our assumptions about how much responsibility individuals have and whether or not the biological order can be altered. These perspectives define the context in which individuals make moral decisions and shape their understanding of moral accountability.

Another major problem in the abortion debate is related to the basis on which public policy is debated. The themes developed here are relevant for other policy issues (e.g., cloning and stem cell research) but come into particularly sharp focus on abortion.

Alasdair Maclntyre argues that morality is at war with itself because each moral agent reaches conclusions by valid forms of inference yet cannot agree about the correctness or appropriateness of the premises with which the argument begins. This means that we can agree on valid forms or structures of an argument, but we cannot agree on the proper or appropriate starting point.”

There are two major reasons for this. First, we have not inherited the social or cultural context in which we can both understand and apply a particular philosophical theory. Our use of a philosophical theory is separate from the culture that gave birth to it and nurtured it. Second, we have inherited conflicting theories of ethics and social philosophy. Ours is a culture that has many definitions, theories, and methods of ethics, few of which lead to conclusions consistent with one another. Each presents conflicting and even contrary claims with respect to what is good for human beings and how they relate to the community.

For example, the classical tradition asks the question: How might human beings together realize the common good? The modern tradition asks: How might human beings prevent themselves from interfering with one another as each goes about his or her concerns? The first question assumes that human beings can know and agree on what is good for all. The second question assumes that what is good for me might not be good for you. If people approach one another with such conflicting assumptions about human nature and the relation of human beings to society, how can policymakers and opinion leaders address major policy issues in a coherent fashion? Knowledge of such disparate points of view, while not making the debate any easier, at least helps us realize why all do not emerge at the same place.

These are some of the thematic issues that we have to face in discussing abortion. We will have to face each theme thoroughly and honestly. Plus, we will have to evaluate each theme in the light of all the other perspectives we have discussed. No matter what the decision, pain, tragedy, and a sense of loss will occur. Such is the nature of the abortion debate.

DISCUSSION QUESTIONS

1. Is the notion of sanctity of life compatible with the taking of life?

2. Many people argue that one should be consistent in one’s position on killing. That is, if one is against abortion, then one should be against war or capital punishment. Do you agree? How would you make exceptions?

3. What are the strengths and weaknesses of each of the major definitions of a person indicated

in the chapter?

4. Does the argument for the moderate position on abortion work? How do you justify your response to this?

5. Do you think Mifepristone is a contraceptive or causes abortions?

NOTES

1. Heather D. Boonstra, Rachel Benson Gold, Cory L. Richards, and Lawrence B. Finer, Abortion in Women’s Lives (New York: Guttmacher Institute, 2006), 20; see also, Lilo T. Strauss, Sonya B. Gamble, Wilda Y. Parker, Douglas A. Cook, Suzanne B. Zane, and Saeed Hamdan, “Abortion Surveillance-United States, 2003,” Morbidity and Mortality Weekly Report 55, November 24, 2006 (SS11): 1-32. The Kaiser Family Foundation indicates that Guttmacher and Centers for Disease Control and Prevention (CDC) data are generally considered the most reliable abortion data; the Guttmacher Institute’s data are more reflective of actual abortions given the limitations on state reporting requirements to the CDC (see “Abortion in the U.S. Fact Sheet,” The Henry J. Kaiser Family Foundation, http://www.kff.org/womenshealth/upload/ published October 2002, accessed April 22, 2008.

2. See Strauss et al., “Abortion Surveillance.” The Guttmacher Institute report suggests that more than half of abortions in the United States are to women in their twenties (Boonstra et al., Abortion in Women’s Lives, 20).

3. James Kelly, “Abortion: What Americans Really Think and the Catholic Challenge,” America 156 (November 2, 1991): 311.

4. Ibid., 314.

5. Ibid., 310.

6. Tamar Lewin, “Nebraska Abortion Case: The Issue Is Interference,” New York Times, September 25, 1995, A8.

7. Ibid.

8. For a thorough discussion of the development of abortion legislation in America, see James C. Mohr, Abortion in America: The Origins and the Evolution of National Policy (New York: Oxford University Press, 1978).

9. For the text of some of these decisions, see Ian Shapiro, ed., Abortion: The Supreme Court Decisions (Indianapolis: Hackett Publishing Co., 1995).

10. “State Policies in Brief: An Overview of Abortion Laws,” Guttmacher Institute, http://www.guttmacher.org/statecenter/spibs/ spib_OAL.pdf, published September 1, 2007, accessed March 5, 2008.

11. “Bans on ‘Partial-Birth’ Abortion,” Guttmacher Institute, http://www.guttmacher.org/statecenter/spibs/spib_BPBA.pdf, published September 1, 2007, accessed March 5, 2008.

12. Daniel Callahan, Abortion: Law, Choice and Morality (New York: Macmillan, 1970), 378ff.

13. For a further and more detailed discussion of this approach, see Thomas A. Shannon and Allen B. Wolter, “Reflections on the Moral Status of the Pre-embryo,” Theological Studies 51 (1990): 603- 26.

14. one should distinguish totipotency from pluripotency. As the embryo develops, certain cells (the inner cell mass) lose their totipotency yet retain significant potential in that they can develop into any cell type of an adult’s body. This kind of potential is called pluripotency. We will discuss these concepts in greater detail in chapter 14.

15. In September 2000, the U.S. Food and Drug Administration approved Mifepristone (formerly known as RU 486).

16. One might consider an “emergency contraception” to be a response to a rape or sexual assault that seeks to prevent either conception or pregnancy. While Catholic hospitals do provide care to victims of sexual assault, there is some controversy over what drugs to provide given the uncertainty about whether the drug functions as a contraceptive or as an abortifacient substance.

17. James Nelson, Human Medicine (Minneapolis: Augsburg Publishing House, 1973), 31ff.

18. Gregory Baum, “Abortion: An Ecumenical Dilemma,” Commonweal 99, no. 9 (November 30, 1973): 231-35.

19. Alasdair Maclntyre, “How to Identify Ethical Principles,” The Belmont Report, Appendix, vol. 1, DHEW publication no. OSO 78-0013, 10-1-41 (Washington, DC).

BIBLIOGRAPHY

“Abortion in the U.S. Fact Sheet.” The Henry J. Kaiser Family Foundation. http://www.kff.org/womenshealth/upload/ Abortion-in-the-U-S-Fact-Sheet.pdf. Published October 2002. Accessed April 22, 2008.

“Bans on ‘Partial-Birth’ Abortion,” Guttmacher Institute. http:// www.guttmacher.org/statecenter/spibs/spib_BPBA.pdf. Published September 1, 2007. Accessed March 5, 2008.

Baum, Gregory. “Abortion: An Ecumenical Dilemma.” Commonweal 99, no. 9 (November 30, 1973): 231-35.

Boonstra, Heather D., Rachel Benson Gold, Cory L. Richards, and Lawrence B. Finer. Abortion in Women’s Lives. New York: Guttmacher Institute, 2006.

Cahill, Lisa Sowle. Sex, Gender, and Christian Ethics. New York: Cambridge University Press, 1996.

Callahan, Daniel. Abortion: Law, Choice and Morality. New York: Macmillan, 1970.

Dellapenna, Joseph W. Dispelling the Myths of Abortion History. Durham, NC: Carolina Academic Press, 2006.

Hendershott, Anne B. The Politics of Abortion. New York: Encounter Books, 2006.

Kelly, James. “Abortion: What Americans Really Think and the Catholic Challenge.” America 165, no. 13 (November 2, 1991): 310-16.

Lewin, Tamar. “Nebraska Abortion Case: The Issue Is Interference.” New York Times. September 25, 1995. A8.

Maclntyre, Alasdair. “How to Identify Ethical Principles,” The Belmont Report, Appendix. Vol. 1. Department of Health, Education, and Welfare Publication Number OSO 78-0013, 10-1-41. Washington, DC.

McBride, Dorothy E. Abortion in the United States: A Reference Handbook. Santa Barbara, CA: ABC-CLIO, 2008.

Mohr, James C. Abortion in America: The Origins and the Evolution of National Policy. New York: Oxford University Press, 1978.

Nelson, James. Human Medicine. Minneapolis: Augsburg Publishing House, 1973.

Shannon, Thomas A., and Allen B. Wolter. “Reflections on the Moral Status of the Pre-embryo.” Theological Studies 51 (1990): 603-26.

Shapiro, Ian, ed. Abortion: The Supreme Court Decisions. Indianapolis: Hackett Publishing Co., 1995.

“State Policies in Brief: An Overview of Abortion Laws.” Guttmacher Institute. http://www.guttmacher.org/statecenter/spibs/spib_OAL.pdf. Published September 1, 2007. Accessed March 5, 2008.

Strauss, Lilo T., Sonya B. Gamble, Wilda Y. Parker, Douglas A. Cook, Suzanne B. Zane, and Saeed Harridan. “Abortion Surveillance-United States, 2003.” Morbidity and Mortality Weekly Report 55, November 24, 2006 (SS11): 1-32.

INTRODUCTION

One of the many wondrous experiences of human life is giving birth to a child. While most of the “facts of life” are known-and frequently graphically discussed and displayed in various media-the reality of a newborn still presents a moment of awe and mystery. This reality is all the more reason why the inability to reproduce is such a tragedy and a heartbreaking experience for many individuals.

In the past, the basic options for infertility were either to accept one’s fate and go on with life or to adopt. Many chose this latter option, and adoption fulfills most of their heart’s desires. For others, however, there is still a desire “to have a child of one’s own.” As satisfying as adoption is for many, for others a critical part of having a child is conception, pregnancy, and giving birth. That part of the “having a child of one’s own” remained an unfulfilled hope until 1978 when Mr. and Mrs. Brown gave birth to the first child conceived outside the human body. The British team of Steptow and Edwards had been working on this procedure for years, and finally all the elements came together and resulted in a baby girl. This technique-in vitro fertilization-changed human reproduction forever.

In this chapter, we discuss the ethics of reproductive technologies. In particular, we focus on technologies aimed at controlling reproduction with the intended outcome of the birth of offspring. Other reproductive technologies might include those devices or substances aimed at controlling fertility in order to prevent the birth of offspring (e.g., contraception and sterilization). Nevertheless, the technologies we will focus on here are generally understood collectively as assisted reproductive technologies or ARTs. They include an array of techniques and medications, arrangements and procedures, all designed to help an individual or a couple reproduce and “have a child of one’s own.”

There are several reasons why one would seek assisted reproductive technology. One reason might be that one is or both individuals in a couple are infertile. In addition, there may be a genetic risk involved in a couple’s decision to procreate. This risk may come from one or both individuals being carriers of a specific disease-related gene. Alternatively, one or both individuals may actually have a genetic disease. (We will discuss issues of genetic diagnosis and risk in the next chapter.) Lastly, some people seek assisted reproductive technology not to reproduce per se but to be compensated for “donating” their gametes or their wombs.

ASSISTED REPRODUCTIVE TECHNOLOGY

There are a large number of methods of artificial reproduction. Many are variants of standard methods. Here the basic ones will be described.

First, there are methods aimed at the manipulation of the woman’s menstrual cycle in order to procure eggs (oocytes) and/or to prepare her reproductive system for pregnancy. Thus, through medications and careful observation of the reproductive system, clinicians can coordinate her menstrual cycle with an assisted reproductive technology.’

Second, there are methods designed for manipulation of the eggs and sperm (gametes) and embryos outside of the human body. These methods include the retrieval of both male and female gametes, preparation of those gametes or embryos, and cryopreservation of either gametes or embryos.

As mentioned above, one manipulates a woman’s menstrual cycle in order to obtain multiple oocytes at one time. This begins with the use of oral contraceptives and includes a process of hyperstimulating her ovaries. Specialists call this technique superovulation. Some woman can choose an optional unstimulated ART cycle instead of superovulation. In addition to the use of specific cocktails of hormone-related drugs, one utilizes either an aspiration technique with a needle (more common) or a laparoscopic technique to obtain the oocytes. Both procedures use general anesthesia.

Next, one prepares the gametes or embryos through specific laboratory techniques. These techniques include micromanipulation, which are procedures at the cellular level. These include gamete selection procedures. For example, one can use a special process for separating X-carrying sperm from Y-carrying sperm for sex selection. Another set of micro manipulation techniques are those of assisted fertilization. The procedures of in vitro fertilization or IVF (fertilizing ova in a laboratory, literally “within glass” fertilization) and intracytoplasmic sperm injection or ICSI (fertilization by using a laser to puncture a hole in the protective layer of the egg, the zona pellucida, and injecting a single sperm cell or spermatozoon) are forms of assisted fertilization. There are also forms of micro manipulation called assisted hatching, which are basically techniques to help the fertilized ovum develop into a zygote and shed the zona pellucida. Finally, one screens the developing preimplantation embryos and scores them based on health and likelihood of surviving transfer into the woman.

During this preparation phase, several new possibilities exist for one to manipulate the genetic makeup of the offspring. Presently, one can perform a preimplantation genetic diagnosis or PGD in order to test for disease-related genes or chromosomal abnormalities (e.g., an extra chromosome as in Down Syndrome). One can also use PGD to screen for the genetic sex of the embryo. Based on the criteria one uses, one selects the desirable embryos and transfers them to the woman or stores them. Many scientists are currently developing techniques called gene transfer, which are the procedures used in gene therapy. While the latter technology is still experimental, proponents hope one day to be able to correct the genetic structure of embryos without having to destroy them.

Another experimental procedure that might one day be used as an ART is somatic cell nuclear transfer cloning or SCNT cloning. This form of cloning accounts for both assisted fertilization (by triggering an embryonic-like state after the transfer of a somatic cell’s nucleus) and genetic manipulation (by duplicating the genome of an adult). Many argue that SCNT should only be used in embryonic stem cell research; others argue that this can help some couples have children that are genetically related to one member of the couple. Yet others argue that such techniques should not be used at all with human cells. We will discuss these issues in greater detail in chapter 14.

The last method of manipulating gametes or embryos outside of the human body is the cryopreservation of gametes or embryos. By freezing gametes or embryos in this way, one can limit the number of times one needs to retrieve oocytes and/or sperm. Thus, for example, a woman only needs to undergo superovulation once and avoids the increased risks associated with it. Plus, frozen embryos can be thawed and transferred during future ART attempts, or researchers can obtain them, with proper consent, and use them in stem cell research. Alternatively, gametes and embryos that are not used may be destroyed.

Third, there is a set of methods of ART aimed at the migration of gametes or embryos into a woman’s body. One method transfers the male semen into a woman; this is called artificial insemination. Artificial insemination can occur with a husband’s semen (artificial insemination by husband, AIH) or with a donor’s semen (artificial insemination by donor, AID). This is the oldest method of artificial reproduction; one performs the artificial insemination with either a syringe or a catheter. Another method that transfers gametes, instead of embryos, is called gamete intrafallopian transfer or GIFT. In GIFT, both oocytes and sperm are transferred to a woman’s fallopian tube in the hope that a sperm cell will fertilize the egg and result in a pregnancy. With AIH, AID, and GIFT, fertilization and implantation occur in the woman’s body.

Another set of methods aims at transferring preimplantation embryos. One method is in vitro fertilization with embryo transfer or IVF-ET. Here, one performs IVF (as described above) and transfers the embryos to the woman’s uterus. Another method is zygote intrafallopian transfer or ZIFT. Here, once the zygote is formed in the laboratory, one transfers it to the woman’s fallopian tube. Also, in tubal embryo transfer or TET, one transfers embryos to the fallopian tube. In both ZIFT and TET, those participating in the ART cycle hope that a zygote or preimplantation embryo descends into the woman’s uterus and implants into the uterine wall (this is what usually occurs following natural fertilization in the fallopian tube). In IVF-ET, ZIFT, and TET, fertilization occurs outside the woman’s body whereas implantation occurs inside the woman’s body.

Fourth, gestational surrogacy is a technique where another woman carries the pregnancy to term.’ In the basic model of surrogacy, the intending (to be nurturer) woman is unable to bear a child. The husband or couple then contracts with another woman-the gestational surrogate-to inseminate her artificially or use other ARTs. She then carries the fetus to term and relinquishes the newborn to the couple. This is the standard model of gestational surrogacy for which the gestational surrogate receives a fee, which can range from $22,000 to $25,000 on average.’ Other models, referred to as altruistic surrogacy, are possible. For example, there have been cases in which a woman’s mother or sister received an embryo from the egg and sperm of the intending couple and carried the pregnancy to term. There also have been reports of friends helping each other in this way.

ETHICAL ISSUES IN IVF-ET

In 2005, there were approximately 134,260 ART cycles reported to the Centers for Disease Control and Prevention (CDC).4 The most common form of ART is in vitro fertilization with embryo transfer; IVF accounted for greater than 99 percent of the treatment types. We will briefly discuss several issues of IVFET because it is so common and it raises several issues that are also observed in other ARTs.

Potential Benefits of IVF-ET

The most significant benefit of IVF-ET is the potential to have genetically related children. Several issues emerge, however, when one considers how to measure success in applying ARTs. Should one measure success by the number of pregnancies? One might think this is a rather straightforward question and procedure. Yet, one can consider pregnancy from two perspectives. The first perspective determines pregnancy by chemical indicators; a woman is pregnant when a blood sample demonstrates a rise in certain hormones. The second perspective determines pregnancy by clinical indicators; a woman is pregnant when the embryo implants in the uterine wall.’ Moreover, another problem with measuring success by pregnancy alone is that not every pregnancy leads to live birth: the actual benefit might not be realized.

Another option is to measure success by the number of pregnancies and live births. In fact, the CDC identifies three measures: pregnancy, birth of one or more living infants, and birth of a single living infant.’ Furthermore, the Fertility Clinic Success Rate and Certification Act of 1992 defines specific statistics that clinics should report to the CDC. According to the CDC, the percentage of ART cycles that resulted in pregnancy for women under the age of thirty-five in 2005 was 43.1 percent.’ In addition, the percentage of ART cycles that resulted in live births for women under the age of thirty- five in 2005 was 37.3 percent.’ One should note the following: 32.9 percent of pregnancies were twins and 4.4 percent of pregnancies were triplets or more; and the average number of embryos transferred for women in this age bracket was 2.4 embryos.

These statistics may seem staggering, especially given the early problems of ART. In 1993, two authors noted, “Human in vitro fertilization (IVF) is surprisingly unsuccessful. In the United States, the overall birth rate per IVF treatment cycle is 14% from 16,405 oocyte retrievals.”9 This means that fertility clinical staff collected 16,405 eggs and attempted to fertilize them. In 2005, for women under the age of thirty-five alone, 41,302 cycles were performed; on average, an initial cycle includes multiple oocytes and 2.4 transferred embryos.1° Furthermore, the percentage of ART cycles that resulted in live births for women under thirty-five years was 37.3 percent. For all age groups, the CDC indicates that there were 38,910 live births, which accounts for about 29 percent of ART cycles reported to the CDC.” To be fair, one has to recall that the normal probability of becoming pregnant in one menstrual cycle (i.e., fecundability) is 20-25 percent.12 Several factors account for the increased success of this maturing technology: better control of reproductive hormones, use of adjuncts, high rate of oocyte retrieval, consistently good fertilization, improved culture techniques, better embryo transfer techniques, enhanced implantation through assisted hatching, and other techniques.” George Annas is still correct, however, when he says: “I’ve often said that the one thing these clinics ought to do is tell patients at the beginning, ‘You will probably not have a child'””

Reproductive Liberty

The ability to have genetically related children is a precious ability, and many commentators warn that there should be very little interference on that ability from the government, which might want to impose regulations on ART. Thus, the idea of one’s reproductive liberty-the freedom to reproduce in any way one can-is another issue at stake in the ethics of ART. There are, however, several reasons why a government would want to regulate ART. For example, a government may want to protect children and future generations if the technology poses significant risks of harm; another reason might

be if ARTs are unjustly distributed throughout society.

Commodification of Human Reproduction: Selling Gametes

Some ethicists object to ART on the grounds that it undermines the dignity of human beings and human reproduction because it promotes the commodification of human biological material. In particular, commentators warn against compensation for gametes, that such compensation may cloud the consent process in which women agree to significant risk, and that such compensation means that egg or sperm donation is not really a donation at all but rather a commercial transaction. Addition ally, opponents argue, this process of commodification reduces the meaning of reproduction and strips it of its personal dimensions-it leads to objectifying reproduction and objectifying children, too.

Financial Costs

The President’s Council on Bioethics notes that, in 2004, assisted reproduction was an approximately $4 billion enterprise that served about one in every six infertile couples in the United States.15 Although some states mandate that insurance carriers provide fertility services, including IVF, insurance companies limit such required services either by paying for only a certain number of cycles or by imposing a lifetime cap on payments for fertility services. Thus, the individual or individuals need to assume a significant portion of the costs for ART. The council’s report on reproduction indicates that at one clinic the initial consult is $370, one IVF cycle with never-frozen embryos is $9,345, an additional transfer of frozen embryos is $4,000, PGD is $4,000, ICSI is $2,000, and preconception sperm selection is also $2,000. Thus, one cycle of ART with elective testing would cost a couple approximately More recently, assisted reproduction programs have introduced risk-sharing or refund practices. Individuals seeking ART pay a higher price initially, but if the treatment is unsuccessful the clinic will refund 90 to 100 percent. The American Society for Reproductive Medicine Ethics Committee concludes that such practices are in principle ethically acceptable, but they do raise significant concerns over

Health Risks

Health risks of ART can affect two groups directly: the woman and the fetus or child (or fetuses or children). To begin, superovulation involves hyperstimulating the woman’s ovaries with drugs to obtain a large number of eggs. Traditionally, these eggs are then harvested through a needle or laparoscopy, which involves general anesthesia. Superovulation may carry risks of unbalancing the natural cycles of reproductive hormones. The hormone used to stimulate the eggs can cause the ovary to rupture. In addition, general anesthesia carries morbidity and mortality risks with it. There is also a danger of ectopic pregnancy in which the zygote or embryo implants in the fallopian tube instead of the uterus.

Another risk of IVF-ET that one needs to address is the possibility of multiple pregnancies. Because clinics transfer between two and four embryos on average, there is the possibility of multiple pregnancies. Multiple pregnancies present potential problems for the mother in terms of the impact on her reproductive system and overall health, as well as discomfort during pregnancy and delivery.

The problem of multiple pregnancies also poses potential risks to the fetuses and newborns. These complications include premature birth and low birth weight. Because of this and other complications, physicians may offer a solution to the problem called fetal reduction. Fetal reduction is a process involving selective abortion of certain fetuses in utero. That is, one can abort a number of the multiple pregnancies so that one or two fetuses will be more likely to survive in a healthier state. Thus, couples who are infertile and have been desperate to have a child now face the possibility of aborting their dream. This may not have been an option they considered, and if they have strong feelings about the morality of abortion, the couple may be in a very difficult position. Even if such an option is morally acceptable to them, individuals involved will still be troubled because the procedure so contradicts their dreams and the purpose of using ARTS.

Some have also claimed that there is a slightly higher risk of congenital abnormalities; however, this claim is controversial.’ For example, in patients who use ICSI, there may be a risk of imprinting disorders, such as Angelman syndrome and BeckwithWiedemann syndrome.

Family Implications: Concepts of Parenthood

The new capabilities of ART radically redefine parenthood. Both women and men have new ways to becoming a parent. For a woman, there are seven options of motherhood:

1. the genetic, who is the source of the egg;

2. the gestational, who carries the pregnancy;

3. the nurturing, who raises the child;

4. the genetic-gestational, who is the source of the egg and carries the pregnancy but does not raise the child;

5. the genetic-nurturing, who is the source of the egg and raises the child but does not carry the pregnancy;

6. the gestational-nurturing, who carries the pregnancy and raises the child but does not provide the egg; and

7. the whole mother, who is the source of the egg, carries the pregnancy, and raises the child.

For a man, there are three options of fatherhood:

1. the genetic, who is the source of the sperm;

2. the nurturing, who raises the child; and

3. the whole father, who provides sperm and raises the child.

To put these options into perspective, it is possible, in considering the variety of ART currently available, that a child could have five different parents: a sperm donor, an egg donor, a gestational

surrogate, the nurturing mother, and the nurturing father.

Other possibilities also affect how one understands parenthood. Posthumous recovery of gametes creates the possibility of becoming a parent after one dies. Cryopreservation of embryos also raises the question of parenthood after divorce or death (of one or both members of a couple).

Historically, adoption raised similar questions because the adopting parents had no relation whatsoever to the child they adopted. These new possibilities based on technical interventions, however, clearly complicate the question of parenthood, especially when the process involves other individuals such as sperm or egg vendors” or a gestational surrogate. These possibilities have given rise to strenuous debates over whether nature, nurture, or some combination of these should be the basis for the new definition of parenthood, especially with respect to social policy.

Unknown Reprogenetic Risks for Offspring

A particular social risk of ART, especially with the use of donor gametes, is the reprogenetic risks that are unknown to offspring. This kind of risk means that, when these children reach adulthood and select a mate, they may unwittingly choose a halfsister or half-brother. While the risk of meeting and selecting a half-sibling in this way is relatively low, it is still a risk nonetheless. If someone reproduces with a half-sibling, there is a greater chance of a genetic disease being expressed in the next generation of offspring (thus, it is a reprogenetic risk).

Disposition of Spare Embryos

Finally, IVF-ET and other ARTs raise the question of what to do with spare or “leftover” embryos. The President’s Council on Bioethics report indicates that there are five options for handling untransferred

1. The embryo(s) could remain in cryostorage and transferred to the woman later;

2. The woman or couple could donate the embryo(s) to another person or couple;

3. The woman or couple could consent to scientists using the embryo(s) in stem cell research;

4. The embryo(s) could remain in cryostorage indefinitely; or

5. The embryo(s) could be thawed and destroyed.

ETHICAL ISSUES IN GESTATIONAL SURROGACY

According to the CDC, only 1 percent of ART cycles used a gestational surrogate.21 Although relatively rare, there are several issues in gestational surrogacy. Given the difference between IVFET and gestational surrogacy, we will now consider five issues in gestational surrogacy.

Objectification of Women

Individuals frequently select gestational surrogates on the basis of their appearance, mental and

physical health, and fertility. In other words, individuals value gestational surrogates for their reproductive capacity. Critics argue that such selection methods are open to the possibility of seeing the woman as an object or a means to an end. Furthermore, these methods reinforce the social stereotyping of women in the role of mother. Thus, there is the danger of compromising their human dignity.

One of the most controversial aspects of surrogacy is whether it is selling a baby or renting one’s womb. The woman signs a contract and bears the child; she then receives the money and gives the baby over to the other party in the contract. Some argue that this is the standard account of buying and selling. Others argue that the fee the woman receives is a fee for a service, and the fees might include other costs such as travel expenses, maternity clothes, prenatal care, and others. Similar to the critique of selling gametes, opponents argue that it might undermine the integrity of the family or the dignity of human reproduction in a family context. Such a commodification, some have argued, perpetuates or reinforces the objectification of women.

Financial Costs

Having a child with a gestational surrogate can cost $45,000 to $70,000.22 This includes agency fees to find a surrogate, attorney fees to craft the contract, and the surrogate’s fees. These figures do not include the financial costs of using other ART. The typical fee for a surrogacy contract is $22,000 to $25,000. Over nine months, this works out to about $2.25 per hour, which is considerably less than the minimum wage. Also, the fee remains the same regardless of the time the surrogate invests in becoming pregnant. Mary Beth Whitehead, the surrogate in the most famous surrogacy case, was artificially inseminated nine times before she became pregnant.

Family Implications: Pressures on Families

Gestational surrogacy, as mentioned above, expands the motherhood options available to women. This form of parenting-gestational surrogacy-may put pressures on members of families. It might put pressure on the gestational surrogate’s family (e.g., her husband, if she has one, and her children, if she has any). Gestational surrogacy might also put pressure on the intending family. For example, a husband of a gestational surrogatewho is desirable because he is a sign of both stability and financial support during the pregnancy-is frequently a forgotten party. While he must assent to the surrogacy, his wife is pregnant with the child of another man. Furthermore, there will literally be a third human being between the surrogate and her husband during the course of the pregnancy. There is also a legal issue here. If a husband consents to having his wife artificially inseminated with the sperm of another man, the resulting child is legally considered to be the husband’s, not the sperm donor’s. Moreover, perhaps the biggest concern is the bond that is formed between an unborn baby and the gestational mother; gestational surrogacy contracts reflect this concern when they describe significant penalties for failing to relinquish the child over to the intending family. Courts use a variety of standards to decide a dispute over parental rights or custody; existing statutes, which vary from state to state, may not be adequate. Courts look to the best interests of the child, the rights of birth mothers, the genetic link between the child and its genetic parents, and the intent of the couple who desired to enter into a surrogacy contract in order to become parents.”

Women’s Rights

In spite of these and other problems associated with surrogacy, many argue that to deny women this opportunity is to deny them the opportunity to act as full adults in society. To deny them this capacity is to treat women paternalistically by implicitly argu ing that they cannot make their own decisions. Also, many feel that if one compromises this reproductive liberty or right, it will provide an opening that others can use to restrict abortion. Thus, many who may have some reservations about surrogacy support it to prevent even more undesirable public policy consequences.

CONCLUSION

There have been three major sexual revolutions in this country. The first, which occurred in the 1950s, was the introduction of the oral contraceptive. “The Pill,” as it came to be known, effectively separated sex from reproduction; one could be quite certain that engaging in sexual intercourse did not lead to reproduction. The second revolution was the introduction of in vitro fertilization in 1978. This led to the separation of reproduction from sex; now one could reproduce without engaging in sexual intercourse. Finally, gestational surrogacy was introduced in the 1980s. This marked the separation of sex from reproduction, reproduction from sex, and both sex and reproduction from the traditional family model. While health risks, financial costs and commodification, reproductive liberty and regulation, and other issues continue to press on us, one hopes that individuals and professionals address these issues as they navigate the separation of sex, reproduction, and the traditional family model.

DISCUSSION QUESTIONS

1. Do you think that nature (i.e., a biological relationship) or nurture (i.e., intended social relationship) should determine parenthood?

2. Do you think the fertility industry should be regulated? If so, by whom: the federal government, state governments, professional societies or associations, or an independent agency?

3. Should insurance plans cover the costs of infertility treatment using ART?

4. Do you think 1VF-ET presents too many risks for the woman?

5. Do you think gestational surrogacy is baby selling?

6. Should gestational surrogate motherhood be prohibited?

NOTES

1. According to the Society for Assisted Reproductive Technology, an ART cycle involves several steps over a four- to sixweek period. For example, in preparation for an embryo transfer and prior to oocyte retrieval, a woman begins taking oral contraceptives in the month prior to the ART cycle.

2. See Peter R. Brinsden, “Gestational Surrogacy,” Human Reproduction Update 9, no. 5 (September 2003): 483-91.

3. Molly M. Ginty, “How Much Did These Babies Cost?” Redbook, July 2004, 136-41.

4. Department of Health and Human Services and the Centers for Disease Control and Prevention, “2005 Assisted Reproductive Technology Success Rates: National Summary and Fertility Clinic Reports,” October 2007, http://www.cdc.gov/ART/ ART2005/508PDF/2005ART508Cover_National.pdf, accessed December 12, 2007, 13 (hereafter, CDC 2005 ART Report). See also Society of Assisted Reproductive Technology (SART), “Clinic Summary Report: All SART Member Clinics,” National Summary Data, https://www.sartcorsonline.com/rptCSR-PublicMultYear. aspx?ClinicPKID=O, accessed December 7, 2007. SART includes over 392 member practices, which represents over 85 percent of ART clinics in the United States.

5. Two things are extremely important to note about this. First, depending on which criterion one uses to define success, one can get different numbers of success in achieving a pregnancy. That is, if one measures pregnancy by the chemical definition, one might get a higher number than if using the clinical definition. Second, neither of these definitions is useful as a predictor of whether this particular embryo will be born.

6. CDC 2005 ART Report, 6.

7. Ibid., 85.

8. A multiple-infant birth is counted as one live birth.

9. Robert M. L. Winston and Alan H. Handyside, “New Challenges in Human In Vitro Fertilization,” Science, May 14, 1993, 932-36.

10. CDC 2005 ART Report, 85.

11. Ibid., 13.

12. Wendy Y. Chang, Sanjay K. Agarwal, and Ricardo Azziz, “Diagnostic Evaluation and Treatment of the Infertile Couple,” in Essential Reproductive Medicine, ed. Bruce R. Carr, Richard E. Blackwell, and Ricardo Azziz (New York: McGraw-Hill, 2005), 359.

13. David R. Meldrum, “Assisted Reproductive Technology: Clinical Aspects,” in Carr et al., Essential Reproductive Medicine, 536.

14. Trip Gabriel, “High-Tech Pregnancies Test Hope’s Limit,” New York Times, January 7, 1996, A10.

15. President’s Council on Bioethics, Reproduction and Responsibility: The Regulation of New Biotechnologies (Washington, DC: President’s Council on Bioethics, 2004), 153.

16. Ibid.

17. American Society for Reproductive Medicine (ASRM) Ethics Committee, “Risk-Sharing or

Refund Programs in Assisted Reproduction,” Ethical Considerations of Assisted Reproductive Technology: American Society for Reproductive Medicine Ethics Committee Reports and Statements, http://www.asrm.org/Media/ Ethics/sharedrisk.pdf, released September 1998, reviewed June 2006, accessed December 12, 2007, 1.

18. Catherine M. DeUgarte, Alan H. DeCherney, and Alan S. Penzias, “Assisted Reproductive Technologies: In Vitro Fertilization and Related Techniques,” in Current Diagnosis and Treatment, Obstetrics and Gynecology, ed. Alan H. DeCherney, Lauren Nathan, T. Murphy Goodwin, and Neri Laufer (New York: McGraw-Hill, 2007), 950-51.

19. Technically, these individuals are not donors because they receive a fee for their services. In 2000, a man typically received between $60 and $70 for a sperm sample, and a woman received from $3,500 to $12,000 for her eggs. See President’s Council Report 2004, 148.

20. Ibid., 34.

21. CDC 2005 ART Report, 85.

22. Ginty, “How Much Did These Babies Cost?” 136-41.

23. American College of Obstetricians and Gynecologists (AGOG), “Surrogate Motherhood,” Ethics in Obstetrics and Gynecology, 2nd ed., http://www.acog.org/from_home/publications/ ethics/ethics050.pdf, accessed December 10, 2007.

BIBLIOGRAPHY

Alpern, Kenneth D., ed. The Ethics of Reproductive Technology. New York: Oxford University Press, 1992.

American College of Obstetricians and Gynecologists. “Surrogate Motherhood.” Ethics in Obstetrics and Gynecology. 2nd ed. http://www.acog.org/from_home/publications/ethics/ethics 050.pdf. Accessed December 10, 2007.

American Society for Reproductive Medicine Ethics Committee. “Risk-Sharing or Refund Programs in Assisted Reproduction.” Ethical Considerations of Assisted Reproductive Technology: American Society for Reproductive Medicine Ethics Committee Reports and Statements. http://www.asrm.org/Media/Ethics/ sharedrisk.pdf. Released September 1998. Reviewed June 2006. Accessed December 12, 2007.

Brinsden, Peter R. “Gestational Surrogacy.” Human Reproduction Update 9, no. 5 (September 2003): 483-91.

Can, Bruce R., Richard E. Blackwell, and Ricardo Azziz, eds. Essential Reproductive Medicine. New York: McGraw-Hill, 2005.

DeCherney, Alan H., Lauren Nathan, T. Murphy Goodwin, and Neri Laufer, eds. Current Diagnosis and Treatment, Obstetrics and Gynecology. New York: McGraw-Hill, 2007.

Department of Health and Human Services and the Centers for Disease Control and Prevention. “2005 Assisted Reproductive Technology Success Rates: National Summary and Fertility Clinic Reports.” http://www.cdc.gov/ART/ART2005/508PDF Published October 2007. Accessed December 12, 2007.

Gabriel, Trip. “High-Tech Pregnancies Test Hope’s Limit.” New York Times. January 7, 1996. A10.

Ginty, Molly M. “How Much Did These Babies Cost?” Redbook, July 2004, 136-41.

Gosden, Roger. Designing Babies: The Brave New World of Reproductive Technology. New York: W. H. Freeman, 1999.

Gunning, Jennifer, and Helen Szoke, eds. The Regulation of Assisted Reproductive Technology. Burlington, VT: Ashgate, 2003.

Peters, Philip G., Jr. How Safe Is Safe Enough? Obligations to the Children of Reproductive Technology. New York: Oxford University Press, 2004.

President’s Council on Bioethics. Reproduction and Responsibility: The Regulation of New Biotechnologies. Washington, DC: President’s Council on Bioethics, 2004.

Ryan, Maura A. Ethics and Economics of Assisted Reproduction: The Cost of Longing. Washington, DC: Georgetown University Press, 2001.

Shenfield, Francoise, and Claude Sureau, eds. Contemporary Ethical Dilemmas in Assisted Reproduction. Boca Raton, FL: Informa Healthcare, 2006.

Society of Assisted Reproductive Technology. “Clinic Summary Report: All SART Member Clinics.” National Summary Data. https://www.sartcorsonline.com/rptCSR_PublicMultYear.asp x? ClinicPKID=O. Accessed December 7, 2007.

Winston, Robert M. L., and Alan H. Handyside. “New Challenges in Human In Vitro Fertilization.” Science. May 14, 1993, 932-36.

INTRODUCTION

In 2003, the Human Genome Project (HGP) came to completion earlier than scheduled. The HGP produced a map of the human genome, which includes data on the location, nucleotide sequence, and identity of genes. Although we have much to learn, especially about the functions of genes and the genetic material between them, current major applications of the data include genetic screening and testing programs, such as preimplantation genetic diagnosis, prenatal diagnosis, and predictive genetic testing. Knowing the sequence of a disease-related gene is one thing; knowing how it works and treating the disease are different. Unfortunately, at present, it is impossible to cure such diseases.

In this chapter, we will focus on two standpoints: that of the patient or client (i.e., the individual or couple receiving diagnostic information) and that of the professional (the individual providing diagnostic information). For the patient or client, this means receiving information before pregnancy, during pregnancy, or after birth. It is at these times that clients make important decisions. For example, a couple may forgo having a child naturally if there is too great a risk for transmitting a genetic disease; instead, they may opt for adoption. For the professional, care must be taken in providing complex genetic and risk information to her client so that the professional does not bias the decision-making process.

In genetic medicine and counseling, genetic information is useful for a variety of decisions and medical conditions. For example, a genetic counselor may become involved in the treatment of cancer, because if a patient has a specific gene-related cancer, he or she may respond to certain chemotherapies better than others. Another clinical application of genetics is pharmacogenomics in which clinicians use a patient’s genotype to determine which drugs will most likely benefit the patient and then prescribe them. While there are important issues and questions involved in integrating genetic information in different medical specialties, we will focus on the use of genetic information for reproductive decision making, a subfield called reprogenetics. That is, we will explore the influence and issues such information has on deciding whether to have biologically related children, continuing with a pregnancy in light of a genetic diagnosis, and deciding what to do with a diagnosis of a late-onset condition (e.g., Huntington’s disease or breast cancer) early in a fetus’s or child’s life. Thus, our emphasis in this chapter will be on the ethical issues raised in early diagnosis.’ Although our focus will be on the ethical issues, we recognize that any discussion of genetics and ethics tends to be very difficult because the material involves highly technical and scientific language on a subject

that changes almost every day.

THREE KINDS OF EARLY DIAGNOSIS

Diagnosis is a process of knowing the cause of symptoms and identifying disease states. Etymologically, the word comes from the Greek roots meaning “to discern” and “to distinguish” and “to learn,” “to know,” or “to perceive.” Early diagnosis can mean a clinician has made a judgment about the presence of, absence of, or potential (i.e., predisposition) for a disease early in the development of human life or early with respect to the onset of a particular disease state.

Not everyone, however, is tested for a genetically related disease. Here, we need to make an important distinction: there is a difference between genetic screening and genetic testing (for diagnosis). James Hodge, citing Lawrence Gostin, states, “Genetic screening refers to programs designed to identify persons in a subpopulation whose genotypes suggest that they or their offspring are at higher risk for a genetic disease or condition.”2 In other words, health care professionals decide who should be tested for genetic diseases and other conditions by applying screening criteria to identify those individuals or groups who are at higher risk for them. Not all screening criteria require knowledge of genotypes. One example of such a screening criterion is maternal age: if a pregnant woman is thirty-five years old or older, the fetus she is carrying is at higher risk for Down syndrome. Thus, the criterion of age is used to determine if an individual should go through further testing to determine the presence of a particular disease (e.g., Down syndrome, or Trisomy 21-an extra copy of chromosome 21). In contrast, Hodge writes, “Genetic testing refers to medical procedures that determine the presence or absence of a disease, condition, or marker in individual patients.”3

There are two general methods of early diagnosis: clinical and molecular/genetic. On the one hand, clinical diagnosis involves the collection, processing, and interpretation of data gleaned from clinical observation and examination. For example, clinical prenatal diagnosis can use ultrasound technology or pedigree analysis (a family’s genetic history). On the other hand, genetic diagnosis involves the collection, processing, and interpretation of data obtained from specific genetic (molecular) technologies such as polymerase chain reaction (PCR), karyotyping, and fluorescence in situ hybridization (FISH) analysis. Polymerase chain reaction is a way to amplify and to measure the amount of genetic information in a particular biological sample usually coupled with a variety of testing known as blotting. Given the size and relative concentration of one’s DNA in a blood sample, PCR enables technicians and clinicians to identify specific sequences and measure their presence. Karyotyping involves manipulating the cells and their genetic material in a way that results in a visual display (called a karyotype) of chromosomes, which are ordered according to length. Fluorescence in situ hybridization analysis is a faster way to detect specific chromosomal abnormalities than karyotyping. FISH involves the use of special (fluorescent) DNA molecules called probes to search for and bind to specific parts of targeted chromosomes. When these molecules bind to the DNA of the chromosomes, the fluorescent part of the probe emits a signal that is read by a computer. Lastly, we call one of the new and exciting technologies microarray or DNA chip technology. This technology uses short segments of genetic material on a computer chip that transmits signals to a computer when the complementary sequences bind to the segments after the chips are exposed to a biological sample. Each signal indicates that the corresponding sequence is present in the sample. Currently scientists

use microarrays primarily for research; but as microarray technology matures, it will gain wider use in the clinical setting. Laboratory technicians receive biological samples from patients or clients through blood sampling, amniocentesis, chorionic villus sampling, fetal tissue sampling, maternal serum sampling (including alpha-fetoprotein testing and multiple marker screening), and other techniques.

When in combination with themselves or other technologies, these methods shape three different kinds of early diagnosis: preimplantation genetic diagnosis, prenatal diagnosis, and predictive genetic diagnosis. In bioethics literature, these may come under slightly different names (e.g., prenatal diagnosis may be prenatal genetic testing). We will now discuss each of these forms of early diagnosis.

Preimplantation Genetic Diagnosis

As we saw in the last chapter, assisted reproductive technology (ART) has ushered in opportunities never before possible in human reproduction. One such opportunity is the ability to choose which embryos one would like to implant in the woman’s uterus. The process of preimplantation genetic diagnosis (PGD) informs this decision making. PGD occurs through genetic testing of embryonic cell(s) obtained from embryos produced through WE selection of embryos presenting with desirable characteristics (or lacking undesirable characteristics, like a disease- causing gene), and transfer of those embryos into the woman’s uterus (to complete the ART cycle). Clinicians obtain the embryonic cells through an embryo biopsy, which occurs on about day three of the cleavage stage (seven to eight cells total in the embryo). To perform the biopsy, technicians use a laser to create a hole in the shell of the embryo and then remove one or two cells with a microscopic- sized pipette. The main indication for using PGD is unsuccessful infertility treatment where there is no identifiable cause in either the female or male partner. Clinicians, however, may recommend PGD for couples where the female partner is of advanced reproductive age, couples who have three or more unsuccessful IVF cycles, and couples who have had unexplained spontaneous miscarriages. PGD may also be used to avoid transferring embryos whose genotypes suggest a predisposition for a genetic disease or a gene for an actual disease.

In choosing which embryos are to be transferred, clinicians first screen them with FISH analysis. Here, clinicians are principally concerned about chromosomes associated with spontaneous abortions. For couples who are at higher risk of having a child with a particular disease or condition, some embryos may then be tested using DNA analysis (e.g., with PCR, etc.) for the one partner’s or both partners’ known mutations causing the specific condition. In principle, one can use PGD to screen and test (and then select) for disease prevention and for desirable traits (e.g., sex and other phenotypes where scientists know the corresponding genotypes).’

Prenatal Diagnosis

Since 1966, scientists have been able to assess the chromosomal constitution of fetuses from cultured cells obtained from amniotic fluid.’ Today, clinicians are able to look for hundreds of conditions with a myriad of screening programs and diagnostic tests. Prenatal screening, as mentioned above, involves the application of particular criteria to identify higher risk individuals or groups. Clinicians use prenatal diagnostic testing in order to determine the presence of or potential for

particular diseaserelated conditions before the pregnancy is carried to term and the child is delivered. The principal indications for prenatal diagnosis include advanced maternal age, previous child with a new chromosome abnormality, presence of structural chromosomal abnormality in one of the parents, family history of a genetic disorder that may be diagnosed by biochemical or DNA analysis, family history of an X-linked disorder for which there is no spe cific prenatal diagnostic test, risk of neural tube defect, and detection of fetal abnormalities by maternal serum screening and fetal ultrasound.

Prenatal diagnosis provides information for couples so they can better prepare for whatever condition the child might have (or develop) or so they can decide to terminate the pregnancy with an abortion. These choices are quite profound and often very difficult. For some disorders, a simple change in diet may address any issues resulting from a disease-causing genotype. Children born with phenylketonuria (PKH), for example, may continue to grow and live productive lives with a slight change in their diet early in life (i.e., removing the amino acid phenylalanine). In contrast, children born with the gene causing Huntington’s disease may live productive lives until they reach their forties or fifties, at which time Huntington’s disease begins its onset of a slow, degenerative neurological condition. Additionally, some genetic disorders, such as Tay-Sachs, may cause a significant amount of pain and suffering early in a child’s life and may lead to death fairly quickly (possibly within the first year of life).

Predictive Genetic Diagnosis

Predictive genetic diagnosis is a form of diagnostic testing in which a patient has not yet developed symptoms for a particular disease but may have the disease-related or disease-causing genotype. Clinicians can perform predictive genetic testing on children as well as adults. Predictive genetic diagnosis in children may pose significant issues. For example, should the child be tested at all? If so, when should the child be told he or she has a genetic disease if the results are positive? There are several psychosocial issues, too. Sometimes families may believe a child to have a genetic disease even before the child is tested. Such a family dynamic is called preselection, which may lead to significant stigmatization of the child.

A more general form of predictive genetic testing can also reveal carriers of disease-related alleles. Thus, while these persons may not develop the disease itself, they are carriers of the genes that may cause the disease in their offspring. Some such individ uals may seek this test if they plan to have children. If a potential parent is a carrier, predicting the likelihood of that parent passing a disease-causing gene to his or her offspring (and the likelihood of the offspring receiving the disease- causing genotype from both parents) may determine whether that couple will pursue natural reproduction, assisted reproduction, adoption, or remain childless. According to Joseph Fletcher, using genetic information in this context is one way in which humankind can achieve genetic control and end “reproductive roulette.”‘

ETHICAL ISSUES IN GENETIC COUNSELING

According to the American Board of Genetic Counseling, “Genetic counseling is the process of helping people understand and adapt to the medical, psychological and familial implications of genetic contributions to disease.”‘ This process includes (1) an interpretation of family and medical

histories to gauge the probability of disease occurrence or recurrence; (2) an education regarding the patterns of inheritance, testing, management, disease prevention, available resources, and research; and (3) a promotion of informed choices and adaptations to the risk or condition.

In January 1992, the National Society of Genetic Counselors adopted a code of ethics, which was since revised in 2004 and 2006.$ Within this code, as well as in the bioethics literature, several ethical issues arise in the context of genetic counseling. When a genetic counselor develops a professional relationship with a client (or clients), he or she must deal with several values, principles, and norms. The following issues reflect the complexity and challenging nature of the process of genetic counseling.

Value Neutrality

Genetic counselors aim to be value neutral in their professional conduct and communication of genetic information to clients. Counselors intend to provide facts in a manner that does not bias their clients’ decision-making processes. These facts include the diagnostic and prognostic implications of genetic test ing. The value that genetic counselors are seeking to protect is patient or client autonomy. Many scholars argue, however, that the provision of such information is inherently value laden and that the distinction between fact and value may be difficult to determine.’ This is particularly the case since these conversations occur in the context of disease and illness, which clients and counselors already understand as negative.

Nondirectiveness

Closely related to value neutrality is the notion of nondirectiveness. Again, genetic counselors seek to be nondirective in their professional-client relationships in order to protect client autonomy. Nondirectiveness requires a counselor to be sensitive to which facts he or she presents, how those data are communicated to clients, and the variety of ways clients may interpret the data and integrate them into health and reproductive decision making.

Risk Assessment

One area where value neutrality and nondirectiveness challenge the professional ethos of genetic counselors is that of risk assessment.1° Risk assessment is an interpretive and value-laden process of collecting, interpreting, and presenting data in a manner that supports rational decision making. Yet, what does a 25 percent chance of having a child with Huntington’s disease mean for a particular couple? Some research suggests that even how one states the probabilities makes a difference in how clients understand the information. For example, a “twenty-five percent” or a “25%” chance is understood differently than a “1-out-of-4” chance. Moreover, presenting the converse (i.e., a 75 percent chance of not having the disease) may bias the decision making. Therefore, risk assessment includes issues of both content (the actual risk) and process (how the risk is communicated) in genetic counseling.

Privacy and Confidentiality

Like other health care providers, genetic counselors seek to protect their clients’ privacy and

confidentiality. Occasionally, circumstances may suggest that breeching this confidentiality is justifiable. For example, if genetic testing reveals that a family member has or is at significant risk of having a genetic disease, a counselor may wish to inform her clients’ family members. Nevertheless, protecting privacy and confidentiality is a major professional principle, which is related to minimizing discrimination and stigmatization and is a way to protect client autonomy by reducing the likelihood of obstacles to that autonomy.

Genetic Essentialism and Genetic Determinism

Genetic essentialism and genetic determinism are two notions that reflect aspects of one’s worldview regarding genetic causation. Genetic counselors seek to clarify genetic information (i.e., the “genetic contributions to disease”), which gives a context and framework for understanding genetics and gene-related diseases. In both genetic essentialism and genetic determinism, there is a form of reductionism at work: in some way, everything is reduced to genes and genetic causes. In genetic essentialism, one’s essence is equated with one’s genes or genotype (“I am my genome”). In genetic determinism, the causes of everything may be attributed to one’s genes. This may range from the causes of diseases and poor health conditions to the causes of behavior (especially criminal behavior). Genetic essentialism tends to minimize the role of other aspects of being human; genetic determinism tends to minimize human responsibility (“it’s not my fault, it’s my genes”) and other factors (including environmental factors) contributing to one’s particular situation. Genetic essentialism and genetic determinism may reinforce judgments leading to discrimination and stigmatization. Therefore, the genetic counselor plays an important role in addressing the causes of many social injustices related to genetic information.

ETHICAL ISSUES IN EARLY DIAGNOSIS

The issues in early diagnosis go beyond the context of genetic counseling and touch individuals and couples at various stages in human life: before pregnancy, during pregnancy, and after birth. Needless to say, the issues one encounters in genetic counseling are related to ethical issues that may be outside of the counselor-client relationship. The following are issues one may come across in the consideration of early diagnosis and the knowledge that may result.

Destruction of Embryos or Fetuses

Following both preimplantation genetic diagnosis and prenatal diagnosis, an individual may choose to destroy embryos or fetuses, respectively. Thus, the dignity and sanctity of early human life are jeopardized and cast against the possibility of the burdensome, painful existence of children with genetic diseases. On the one hand, many believe one cannot use such genetic information if it will lead to the destruction of embryos or fetuses (i.e., discarding embryos or aborting fetuses, respectively). On the other hand, many believe it is irresponsible to bring a child into existence if that child will suffer tremendously and his or her entire existence will be subsumed in a fight for survival (see “A Wrongful Life” below). Here, one may invoke the perspective that such children may never have a quality of life. Furthermore, one of the reasons why genetic counselors seek to be value neutral and nondirective is to avoid biasing a decision for or against abortion: such a decision should rest with the client herself (or clients themselves).

Risks of Harm

On the one hand, certain forms of testing carry a significant risk of harm, especially to the unborn. Even if a couple’s intent is never to abort a fetus, the invasiveness of amniocentesis and chorionic villus sampling (CVS) presents a risk of fetal loss or fetal malformation. Clinicians typically perform CVS earlier in the first trimester (as early as week ten) whereas amniocentesis is usually performed in the middle of the second trimester (around week fifteen). Traditional amniocentesis and CVS possess comparable risks of harm to the fetus (approximately 0.5 percent chance of losing a pregnancy). Clinicians have attempted to perform amniocentesis earlier (at about weeks eleven to thirteen), but some research suggests that this increases the risks for fetal loss and malformation.”

Because traditional amniocentesis occurs at a time when the fetus is nearing viability and after women may experience quickening, clinicians have sought to develop tests for earlier in pregnancy. However, CVS, though done earlier in the pregnancy, is still an invasive procedure. Thus, alternative diagnostic methods were developed recently such as maternal serum sampling, which seeks trace amounts of fetal blood that have crossed over into the maternal blood circulation. Drawing a blood sample from the mother-to-be is less invasive than an amniocentesis, and it carries significantly less risk to the fetus itself.

On the other hand, there may be tremendous anxiety and worry associated with pregnancy. By performing tests, clinicians may be able to offer a certain degree of reassurance. While this reassurance may be accompanied with sadness (e.g., if the diagnosis is positive), it may well reduce the anxiety and stress in the woman and/or couple.

Eugenics

Using genetic information to benefit individuals, groups, or society is not a new idea. Yet the history of using this kind of information demonstrates the more ethically problematic aspects of human history. Generally, eugenics refers to the application of genetic information to improve human heredity or to benefit human society. Historically, this occurred with the breeding techniques and husbandry. Many critics of the “new genetics” (i.e., contemporary uses of genetic information and techniques for clinical or reproductive decision making), however, suggest that there are eugenic motives at work.12 For example, some argue that PGD selection is a form of eugenics because it “improves the stock” in the next generation. Buchanan et al. write, “Even the brightest aspirations of the new genetics are from time to time dimmed by the shadow of eugenics. The very term has been in such bad odor since the era of Nazi ‘racial hygiene’ that few people today wish to be associated with eugenics.”13

Diagnostic-Therapeutic Gap

One major problem with early diagnosis is called the diagnostic-therapeutic gap. The diagnostic- therapeutic gap refers to the ability of clinicians to diagnose a particular disease-state and the inability of clinicians to treat that particular disease-state. For example, while clinicians may be able to diagnose Huntington’s disease, many who are at risk for it may not want to know they will eventually experience the slow, degenerative neurological condition associated with it, which ultimately will lead to their death.14 Presently, such a diagnosis would be a prediction of a premature

and painful death as there is no curative treatment available for Huntington’s disease. At best, clinicians may be able to manage a patient’s symptoms and provide palliative care.

Objectification of Children

A particular problem arising out of greater control over the next generation’s genotypes is an objectification of children. By subjecting embryos or fetuses to decisions that may be based on parental desires (e.g., for blond hair, for a boy instead of a girl, or for some other trait), parents may be objectifying children in a way that undermines their uniqueness and dignity as human beings. In this sense, children become the objects of parental desire. The ability to select particular traits in the next generation, however, may not simply be a matter of objectification. Some proponents claim that this is a way to prevent genetic disease; therefore, this process is better understood in the context of public health. Others may claim, however, that some traits (e.g., hair color or eye color or sex) may not be important for public health.” Many opponents are concerned about having market dynamics drive the inheritance pattern of human society: only those who can afford to buy the so-called best, most desired genes are more likely to have them in their children. Objectification may also reflect and reinforce elements of genetic essentialism and genetic determinism.

Right to an Open Future

Related to the problem of the objectification of children is the notion that children have a right to an open future, which may be threatened or diminished as a result of controlling genetic information in human reproduction through early diagnosis. In citing Joel Feinberg, Buchanan et al. describe the right to an open future in this way:

The idea is that parents have a responsibility to help their children during their growth to adulthood to develop capacities for practical judgment and autonomous choice, and to develop as well at least a reasonable range of the skills and capacities necessary to provide them the choice of a reasonable array of different life plans available to members of their society.’

Through the application of genetic information, however, parents may not embody such a responsibility and may preclude the development of certain life plans, skills, or capacities in their children. For example, parents may choose to select traits for their child that increase her athletic abilities so that the child can grow up and secure college tuition through an athletic scholarship. The right to an open future, however, would mean that the child should have the freedom to choose whether she wants to be an athlete or an accountant or to pursue some other occupation. Selecting traits in this way further objectifies children, undermines their developmental processes, supports the notion of genetic determinism, and creates the possibility of rejection or stigmatization if children resist their parents’ plans for them.

Discrimination and Stigmatization

Discrimination and stigmatization are problems that go beyond the genetic counseling relationship. A major factor in minimizing discrimination and stigmatization, however, is the protection of patient or client privacy and the maintenance of their confidentiality. Discrimination and stigmatization are two issues genetic counselors want to minimize in the provision of genetic data. In this context,

discrimination refers to the unjust treatment of persons with a particular genotype. Discrimination may become manifest in employers basing their hiring decisions on genotypes; it may also be witnessed in unfairly restricting an individual’s access to health care. Health insurance agencies are interested in knowing whether patients have any preexisting conditions, which include gene-related diseases. However, should insurance agencies be informed of a genetic diagnosis? Would it matter if the person was a carrier but did not have the particular disease?

Similarly, stigmatization refers to a psychosocial element of interpersonal relationships where one person projects or presumes a particular negative judgment on the abilities or worth of an individual solely on the basis of his or her genotype. Even if someone is a carrier for a condition, he or she may feel stigmatized as if he or she had the genetic condition. The psychosocial problems associated with stigmatization can persist even after the counseling context. Such stigmatization may remain in his or her family relationships, in his or her community, and it may ultimately erode his or her sense of belonging and self-worth.

A growing problem with discrimination and stigmatization related to privacy and confidentiality comes out of the development of storing biological samples in special banks called biobanks. Often this is done for research purposes; other times a person may wish to store particular samples or biological material (e.g., preimplantation embryos). In addition, law enforcement professionals now store some persons’ genetic information in forensic DNA databases, which they use to identify criminals with a DNA match. Nevertheless, if research is conducted on such biological material, what ensures that the identity of the research subject is protected if the information obtained in research might reveal a significant health problem? What would prevent that person’s information from falling into the wrong hands? Protecting patient or client privacy and confidentiality-in genetic counseling or biobanking-is a way to protect his or her autonomy since such information may be unjustly used to restrict access to jobs, health care, education, and so on.

On May 1, 2008, the House of Representatives passed the Genetic Information Nondiscrimination Act (GINA) by a vote of 414 to 1. One day before National DNA Day, on April 24, 2008, the Senate passed the same bill by a vote of 95 to 0. Legislators designed GINA to protect individuals against genetic discrimination in seeking health insurance coverage and employment. Because of these protections, policymakers hope that more Americans will take advantage of genetic testing as part of their health care.

A Wrongful Life

Finally, early diagnosis gives rise to the concept of a wrongful life. Legally, wrongful life claims can be quite complex,” but the basic idea is that someone believes that a harm could have been prevented if the person suffering that harm had never been bom. Here, parents may claim that the harm results from negligence of a physician, health care professional, or institution (e.g., a failure to inform them of a particular genetic diagnosis) because having the appropriate information would have led to either a decision not to conceive or to abort the fetus. Buchanan et al. write,

The special feature of these cases that distinguishes them from other negligence cases and that has vexed many of the courts confronting them is that the disease or condition is claimed to be so harmful and irremediable that it makes the child’s life not worth living. Thus the wrong done to

the child is having been brought into existence or given life in this condition.”

Framing wrongful life claims in terms of a right, Buchanan et al. state, “The right in question is the right of the child who does exist with a life not worth living not to have been brought into exis tence with such a life.”” One can levy such a claim, in principle, against parents, too, if they had prior knowledge of such harmful or burdensome conditions in their child-to-be. The notion of a wrongful life is causing health care providers and parents alike to consider the meaning of responsibility in human reproduction and parenthood: if we have access to certain information, to what extent are we obligated to use it in making reproductive choices?

CONCLUSION

Early diagnosis is a very critical set of technologies because they give us significant information about embryos, fetuses, and newborns. Consequently, we now have a range of choices that we never had before. These choices are frequently problematic. People who previously would not have considered abortion may now find themselves considering it because of the presence of a severe genetic disease. Individuals may also find it difficult to understand or deal with an ambiguous diagnosis; that is, the test may reveal an abnormality, but no one may know what consequences, if any, it has. Finally, as our knowledge of genetics progresses, couples may learn that the fetus either has a predisposition for a disease or has a disease such as breast cancer or Huntington’s disease that will not show up until the individual is in his or her forties or fifties. How does one respond to such information?

But the information is there. Until scientists can develop therapies for genetic diseases, many pregnancies will be tentative and couples will be forced into decisions that they may not want to make. While the various technologies of early diagnosis provide many benefits, they may also serve as case studies for the complex and frequently unintended consequences of the applications of technology.

DISCUSSION QUESTIONS

1. What is the problem that prenatal diagnosis is intended to solve?

2. Does preimplantation genetic diagnosis resolve any of the problems surrounding traditional forms of prenatal diagnosis?

3. Should prenatal diagnosis be a routine part of prenatal health care? Why or why not?

4. Some refer to prenatal diagnosis as a “search-anddestroy mission.” Others argue that it allows many fetuses to live that might otherwise have been aborted because their health condition was unknown. Which do you think is a more accurate description of prenatal diagnosis?

5. Do you think selecting against certain characteristics through abortion is a form of eugenics or genetic engineering?

6. Is it possible for a genetic counselor to be value neutral and nondirective?

7. Is it morally justifiable for parents to select traits in their children that give them a competitive advantage over others? For example, in athletics? In musical performance? In mathematics? Would it make a difference if such a selection were freely available to everyone or to only those who could afford it?

8. Do health care insurance companies have a right to genetic diagnoses?

NOTES

1. We use the term early diagnosis to demonstrate that not all forms of early diagnosis require genetic technology per se.

2. James G. Hodge, “Genetic Testing and Screening: IV. Public Health Context,” in Encyclopedia of Bioethics, vol. 2, ed. Stephen G. Post, 3rd ed. (New York: Macmillan Reference USA, 2004), 1016.

3. Ibid., 1017.

4. David Cram and Adrianne Pope, “Preimplantation Genetic Diagnosis: Current and Future Perspectives,” Journal of Law and Medicine 15, no. 36 (2007): 36-44.

5. Robert L. Nussbaum, Roderick R. McInnes, and Huntington E Willard, Genetics in Medicine, 6th ed. (Philadelphia: W. B. Saunders, 2001), 359-74 (chapter 18, “Prenatal Diagnosis”).

6. Joseph Fletcher, The Ethics of Genetic Control: Ending Reproductive Roulette (Buffalo, NY: Prometheus Books, 1988).

7. American Board of Genetic Counseling, “What Is Genetic Counseling?” http://www.abec.net/english/View.asp?x=1683, accessed December 7, 2007. See also Journal of Genetic Counseling 15 (April 2006).

8. National Society of Genetic Counselors, “Code of Ethics,” http://www.nsgc.org/about/codeEthics.cfm, accessed February 11, 2008.

9. For example, see Karen Grandstrand Gervais, “Objectivity, Value Neutrality, and Nondirectiveness in Genetic Counseling,” in Prescribing Our Future: Ethical Challenges in Genetic Counseling, ed. Dianne M. Bartels, Bonnie S. LeRoy, and Arthur L. Caplan (New York: Aldine De Gruyter, 1993), 119-30.

10. For example, see Susan Michie and Theresa Marteau, “Genetic Counseling: Some Issues of Theory and Practice,” in The Troubled Helix: Social and Psychological Implications of the New Human Genetics, ed. Theresa Marteau and Martin Richards (New York: Cambridge University Press, 1996), 104-22.

11. Nancy Press and Kiley Ariail, “Genetic Testing and Screening: I. Reproductive Genetic Testing,” in Post, Encyclopedia of Bioethics, 2:996-1004.

12. For example, see Allen Buchanan, Dan W. Brock, Norman Daniels, and Daniel Wilder, From Chance to Choice: Genetics and Justice (New York: Cambridge University Press, 2000), 9-10, 27- 60, and 258-303.

13. Ibid., 9. See also Robert Proctor, Racial Hygiene: Medicine under the Nazis (Cambridge, MA: Harvard University Press, 1988).

14. See Sue Wright, Julia Madigan, and Anonymous, “Daily Life and the New Genetics: Some Personal Stories-1.2 Huntington’s Disease,” in Marteau and Richards, The Troubled Helix, 4-26.

15. One exception to this may be X-linked genetic diseases.

16. Buchanan et al., From Chance to Choice, 170.

17. Ibid., 232-42.

18. Ibid., 233.

19. Ibid., 236.

BIBLIOGRAPHY

American Board of Genetic Counseling. “What Is Genetic Counseling?” http://www.abec.net/english/View.asp?x=1683. Accessed December 7, 2007.

Bartels, Dianne M., Bonnie S. LeRoy, and Arthur L. Caplan, eds. Prescribing Our Future: Ethical Challenges in Genetic Counseling. New York: Aldine De Gruyter, 1993.

Buchanan, Allen, Dan W. Brock, Norman Daniels, and Daniel Wilder. From Chance to Choice: Genetics and Justice. New York: Cambridge University Press, 2000.

Cram, David, and Adrianne Pope. “Preimplantation Genetic Diagnosis: Current and Future Perspectives.” Journal of Law and Medicine 15, no. 36 (2007): 36-44.

Fletcher, Joseph. The Ethics of Genetic Control: Ending Reproductive Roulette. Buffalo, NY: Prometheus Books, 1988.

Marteau, Theresa, and Martin Richards, eds. The Troubled Helix: Social and Psychological Implications of the New Human Genetics. New York: Cambridge University Press, 1996.

National Society of Genetic Counselors. “Code of Ethics,” http://www.nsgc.org/about/codeEthics.cfin. Accessed February 11, 2008.

Nussbaum, Robert L., Roderick R. McInnes, and Huntington F. Willard. Genetics in Medicine. 6th ed. Philadelphia: W. B. Saunders, 2001.

Peters, Ted. Playing God? Genetic Determinism and Human Freedom. 2nd ed. New York: Routledge,

2003.

Post, Stephen G., ed. Encyclopedia of Bioethics. Vol. 2. 3rd ed. New York: Macmillan Reference USA, 2004.

Proctor, Robert. Racial Hygiene: Medicine under the Nazis. Cambridge, MA: Harvard University Press, 1988.

INTRODUCTION

One of the most critical moments in the life of a person is the end of that life. But ironically, much confusion surrounds that moment with respect to both its significance and its occurrence. On the one hand, Philippe Aries had described the medieval ritual of death in which the one dying took formal leave of his or her loved ones and the community. On the other hand, the moment of death was frequently uncertain. For example, there is a nineteenth-century American literature reflecting the fear of being buried alive. Various technical interventions such as breathing tubes or bells were attached to the interiors of coffins so that someone mistakenly buried alive could signal others. The morgue originally was a place to observe bodies to ensure that the individual was in fact dead.

Several realities softened the way many people experienced these problems. First, few medicines were available to help people overcome illnesses; death typically came quickly after the onset of an illness. Second, no technical interventions were present to prolong life. Third, since the life span was short-forty years would have been considered a ripe old age even a hundred years agopeople were more accepting of death as a fact of life. Thus, when people became ill they died, and typically they died within a community context that accepted their dying.

Perhaps the major way to show the difference between an earlier age and today is found in a petition from the litany of saints: “From a sudden and unprovided death, deliver us, 0 Lord.” Historically, to die without taking a formal leave, without partici pating in reconciliation, without putting one’s affairs in order, and without acknowledging the end was a personal and communal tragedy. The worst death was sudden or accidental, perhaps dying in an accident by the roadside while on a trip. This included being alone without family, friends, and religious ritual to soothe the transition between this life and what was to follow. Today, however, most would want a sudden and rapid death, preferably a death that would catch one unaware of its arrival. While people surely would want to have their affairs in order, most seem to want a rapid end because of our modern fear of a lingering, out of control death. Daniel Callahan, in his book The Troubled Dream of Life,’ describes the premodern death as a tame death, one mediated by the comforts of family and community. He characterizes modern death as a wild death, a death in which dying is out of control because we have surrendered the process of dying to technology and institutions.

Several factors led to the shift from tame death to wild death. First, our life span has increased dramatically in the last several generations. People can now expect to live until their mid-seventies or even longer.’ Thus, we are candidates for diseases that may not have afflicted our ancestors simply because they did not live long enough to contract them. Second, public sanitation, clean drinking

water, and modern medicine have succeeded in eliminating many of the diseases that would routinely destroy whole populations. Third, and perhaps most critically, our generation has the technical capacity to intervene and prolong the dying process with various life-support systems.

The use of respirators and other life-support systems poses significant problems with respect to defining and recognizing death. These technical interventions mask or hide the traditional criteria used in recognizing death for the past several generations: spontaneous cessation of breathing and heartbeat. That is, if the absence of breathing and heartbeat is the sign of death, how do these criteria apply when one is on a respirator? When a respirator is breathing for an individual, in what sense, if any, can one say that person is alive? Can one consider that person to be dead? Thus, the need for an examination of the definition of death and its diagnostic criteria is pressed upon us.

FOUR APPROACHES

The framework developed by Robert Veatch for examining various definitions of death is still useful.’ The framework helps us identify significant issues, makes us aware of the consequences of a particular definition, and aids us in being precise in evaluating various criteria for validating the definition. Here, it is important to keep in mind the philosophical difference between a definition and its criteria. A definition of death is an ontological concept: it pertains to what death is. In contrast, criteria for death are epistemological concepts: they relate ways in which we know whether that death exists or not. In other words, a definition of death describes the reality of death while the criteria for death describe the knowledge (or how we might come to know) that death.

Cardiopulmonary Death

This definition reflects the traditional understanding of life and death: a person is dead when his or her heart and lungs stop (i.e., cessation of cardiopulmonary functions). Since breath and blood are the vital “stuff” of life, their absence marks the presence of death. In this way, when the vital signs are absent, one recognizes that death has occurred. That is, a clinician diagnoses death when there is no evidence that the person is breathing or the heart is beating. The use of the respirator and other life- support technologies, however, clouds this traditional definition. Who (or what) is responsible for the vital signs: the person or the technology?

Metaphysical Death

The second definition emerges from a philosophical and religious perspective: a person is dead when his or her soul separates from his or her body. This definition, based on the philosophy of Aristotle, understands the person as a unity of body and soul, or matter and form. The soul (form) animates the body (matter) creating the unique entity that we know as the person. Death occurs when these two elements separate; death is the dis solution of the union of body and soul. The main problem with this definition is how to test whether the union is dissolved. That is, we lack diagnostic criteria for this definition because, empirically, it is impossible for a clinician to measure the extent to which a person’s soul is present. Some commentators talk about the loss of an “integrative unity” in the dying process, but this is extremely difficult to measure using biomedical science.

Whole Brain Death

Veatch’s third and fourth definitions-whole brain death and neocortical death-respond to the dilemmas of defining death posed by technical interventions into the dying process. Thus, as mentioned, a respirator can mask the inability to breathe spontaneously. Also, a person in an irreversible coma or a permanent vegetative state (also called a state of post-coma unresponsiveness) can have his or her physical life extended by use of various life-support systems. The intensive care unit (ICU) is a symbol of the tremendous success of modern medicine because many lives that would have been lost are routinely saved. But it is also a symbol of the dilemmas of modern medicine in that often the best that technology can do is either to maintain the status quo or to prolong the dying that will inevitably lead to death. Thus, the need for new definitions and criteria arises.

The standards for irreversible coma drawn up by an ad hoc committee at the Harvard Medical School in 1969 led to the concept of whole brain death: a person is dead when his or her entire brain, including the brain stem, ceases to function.” In this orientation, the brain is the locus of death because it is the organ that integrates all other organ systems and is the basis for the person’s social presence in the world. The death of the brain removes the biological precondition for the person’s existence precisely because of this irreversible disintegration of the physiology of the brain itself. The death of the whole brain (the brain stem, the cortex, and the neocortex) is equated with the death of the person because without this organ, the person has no means of being biologically, physiologically, and, therefore, socially integrated. For whole brain death, the criteria include unreceptivity and un responsiveness, no spontaneous movements or breathing, no reflexes, with the confirmation of this situation by an electroencephalogram; these seek to give a means of knowing a total and irreversible lack of activity in the brain.

Neocortical Death

One problem yet remains. Sometimes the brain stem of a person, typically someone in a permanent vegetative state, may remain operative even though the rest of the brain is irreversibly destroyed. Since the brain stem is responsible for our involuntary nervous system, this individual may be breathing spontaneously and his or her heart beating on its own. According to the whole brain death definition, this individual is not dead. Neocortical death addresses this situation by looking only to the neocortex of the human brain as the locus for a definition of death. Proponents of this definition select the neocortex because it appears to be the biological precondition for consciousness and self- awareness, distinctive personal characteristics, and other executive functions of personal life. In this definition, because disease or trauma irreversibly destroys the biological basis for self-awareness, this individual is no longer an integrated social whole and, therefore, no longer a person. The person is dead even though, paradoxically, involuntary aspects of physical life continue. By using this definition, we confront a situation with a cadaver that is still breathing under its own power, so to speak. The disposition of such a cadaver presents tremendous religious, philosophical, and psychosocial problems, such as dualism and other mind-body relation issues.

The defining of death requires awesome responsibilities. Some suggest that such attempts to redefine death are well beyond the responsibilities human beings have. Others argue that we have no choice, since not to decide is also to decide. Because there are limits to medicine, we must make a virtue of necessity and establish reasonable definitions and defensible criteria. In doing this, it may be prudent to keep in mind the sage advice of Paul Ramsey that while there may be limits to curing,

there are never limits to caring.’ Ramsey also warns us not to consider the definition of death along with needs that can be fulfilled by what a potentially dead person has to offer. For example, we ought not to consider the definition of death if by changing that definition we can harvest more organs for transplantation into patients who need them.

One common objection to redefining death (and using criteria that are not compatible with our certitude of death) is that it is “playing God,” that is, appropriating to human beings what is the responsibility of God alone. The traditional understanding of God as author of life and death forms the basis of this objection. Hence, death is God’s responsibility, and interfering with it is overstepping the limits of human responsibility. First, such a view confuses defining death with the authority to take life. The purpose of defining death and establishing criteria is to determine when it has occurred; the purpose is not to take a person’s life. Second, this view uncritically, or perhaps naively, assumes that God is directly and immediately involved in each and every physical or biological event in the universe. While wanting to avoid the position that God created the world and then left it to its own devices, we must also reject the contrary position, which assumes that God directs each and every act occurring in the world. The former view overstates human responsibility; the latter devalues it.

A second problem with redefining death comes from the very practical issue of what to do with people in irreversible comas or permanent vegetative states. On the one hand, health care providers could maintain and care for those individuals in such conditions almost indefinitely. On the other hand, if we do maintain such individuals our health care facilities, including limited and expensive intensive care units, will become overburdened. Individuals who need an ICU as a transitional phase of their recovery may be at risk of not being admitted because of overcrowding in the unit. Thus, considerations of space and economics force the question of the status of these individuals upon us. Also, our own ethical concern for respect for persons and for life causes us to examine their situation. A person can be just as much violated by overtreatment as by undertreatment. We have a moral obligation to treat a cadaver with respect, but not to continue to provide it with expensive medical therapies. Thus, a reexamination of the definition of death can provide us with an orientation to some of these problems.

The issues raised by the definitions of death and corresponding obligations to provide treatment to persons generate other significant questions in health care decision making. For example, issues of medical futility, or disputes over what is medically beneficial, emerge when, if by declaring a patient dead, a health care provider indicates that his or her obligations to provide medical treatment to such a patient are no longer applicable. If families disagree with the reality of death, they will likewise disagree with the lack of obligations to provide treatments. Conversely, if a physician believes medical treatment is no longer beneficial to a patient because that patient is dead, then he or she may believe that he or she has reached the end of medicine based on its own reason for being.

Third, we need to consider the issue of suffering. Although suffering is an evil and is one of the major problems of human existence, we have nonetheless attempted to find meaning in it, again making a virtue of necessity. Some see suffering as contributing to the development of character, as strengthening one’s personality. The discipline learned from suffering allows a person to make his or her way through the world and succeed. Others experience suffering in a religious context and see it

as a means of transforming the self and the community. Such an experience of redemptive suffering can be an occasion for personal growth and the strengthening of the community. All of us know the inspiration that one can derive from witnessing such an experience of suffering.

Yet, when a person is comatose, when an individual cannot personalize the suffering or in some way appropriate the suffering to oneself and one’s life project, may not such suffering simply be impersonal, unredemptive, meaningless? Although one may wish to make suffering a religious experience or an occasion for per sonal growth (indeed, one may even succeed in this), might there not come a time or a situation in which such efforts cease? The patient is in a coma or an irreversible vegetative state and cannot respond to the situation. The patient cannot interact with the family. One can make little or no sense of the situation; growth and development can no longer occur. Such destructive suffering may lead to the despair of all.

Finally, we must be cautious about when and how we entertain different definitions of death and their criteria. As mentioned above, Ramsey warns us to consider such a context because we might be prone to shape the definition in a way that favors one group over another. One subject within which this is preeminently a concern is organ procurement. Since the development of organ transplantation, organ procurement agencies have initiated efforts to increase the organ supply. One of those efforts includes institutionalizing donation after cardiac death through compliance standards (e.g., every hospital needs to have a policy on donation after cardiac death [DCD]). While organ donation historically occurred after cardiopulmonary death, organ transplantation standards evolved principally around whole brain death. Today, as agencies continue to increase the organ supply, they increasingly invoke the more traditional definition of death in DCD: cardiopulmonary death. This is why some use the phrase “back to the future” to describe DCD. Another set of questions in organ transplantation that relates to the definition of death involves anencephalic infants. If one uses the whole brain death definition, then one cannot harvest the newborn’s organs without allowing it to die first (i.e., according to the definition). If one uses the neocortical brain death definition, however, then one could harvest the newborn’s organs without waiting for the newborn’s heart to stop or whole brain to die.

CURRENT DIRECTIONS

Personal and technical considerations that give rise to attempts to redefine death continue to be with us. Such attempts are an effort to come to terms with the limits of medicine in seek ing to cure an individual. They also are an effort to respect the rights of individuals and to maintain their dignity by prohibiting over-treatment or inappropriate treatment. In addition, the redefinition of death is an attempt to resolve the limbolike situations of many patients, in a variety of contexts, where technical interventions support their vital functions but whose status as alive or dead is questionable.

The continued press of events, ongoing debates of the appropriateness of various definitions of death, and the continuing problems presented by life-support systems led to a formal consideration of the definition of death by a presidential commission in 1981: The President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. This commission, recognizing that many states legislated differing definitions of death, proposed a uniform standard. The commission reached its conclusion about the definition of death and its implementation based on several considerations:’

1. Recent developments mandate such considerations.

2. This restatement ought to be a matter of statutory law.

3. Such laws ought to be, at present, enacted on the state level.

4. Such laws ought to be uniform.

5. The definition ought to address physiological standards rather than medical tests and criteria that can be rendered outdated by new knowledge and technical developments.

6. Death is a unitary phenomenon and can be determined by either traditional heart-lung criteria or brain criteria. This helps avoid perceptions of different degrees of death.

7. Definitions of death ought to be kept separate from provisions concerning organ donation and decisions to withhold or withdraw life support systems.

Given these considerations as well as the conclusion of various other studies, the commission recommended the following as a uniform definition of death: “An individual who has sustained either (1) irreversible cessation of circulatory and respiratory function, or (2) irreversible cessation of all function of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards.”‘

The strength of this proposed definition is that it recognizes-to put it directly-that when one is dead, that particular death is the same reality regardless of which criteria a clinician uses in diagnosing it. Thus, (whole) brain death has the same validity as traditional cardiopulmonary death. Also, the definition does not lock anyone into the technology or knowledge of a particular time. The criteria for determining death are the responsibility of the medical profession and will change as knowledge and technology change.

Yet, this proposed definition has not resolved all problems. The commission has provided a framework for analysis, a location for determining criteria, and a validation of the concept of death, regardless of how one recognizes it. While not resolving all of the difficult and frequently tragic circumstances that surround death, its defining, or the applications of clinical criteria, the commission orients us to an understanding that can help us resolve many of our difficulties.

Neuroscience is one of the fastest growing fields in the biomedical sciences. Likewise, biomedical technology has matured, and greater dialogue about which diagnostic tools and techniques to use has cultivated a growing certitude over diagnosing death. Other pressures, however, may preclude appropriate use of the tools and techniques. Clinicians may be pressed for time and may not perform the diagnostic tests appropriately (e.g., apnea tests). In contrast, some clinicians may be worried about not being certain enough and may order tests that are not required; an electroencephalogram (EEG) is not required to determine death, it may merely affirm the evidence in other, less expensive tests. Yet, clinicians may order their use just to be sure. Recently, one study found variation in the guidelines for determining death by brain death criteria.’ Furthermore, the growing interculturalism of contemporary American health care also creates a situation where individuals who differ in their

views on death are faced with the prospect of having to reconcile divergent worldviews. For example, some cultures may outright reject whole brain death. How are clinicians to accommodate or respect those beliefs when, legally, they understand the patient to be dead? Thus, we must have greater sensitivity and vigilance in understanding what definitions of death we each have and how we apply our criteria for knowing while caring and respecting patients and their families.

Linda Emanuel, a physician, proposes a contemporary response to some of these issues, including some raised by Veatch. Her point is that although one may frequently consider life and death to be distinct states, with a relatively clear threshold between them, dying is, rather, a process that results not in a state of death, but a state of not being. Emanuel notes: “The traditional model of life and death as poles of a binary opposition is therefore in need of modification. The new model must have only one state; there is only life and its cessation. The challenge shifts from understanding death to understanding life and its loss. Attempts to define death must therefore be recast as attempts to define loss of life.”‘

For Emanuel, “the living person is the product of all the interacting systems of the body. Life is understood as the totality of biological and cognitive and spiritual life.” The reality and experience of this model are critical in that “the activities of the whole system can cease while some components of the system continue, and any one component can cease to function while the whole continues, without in any way challenging the concept of life or person.” This means that at various stages during the process of losing one’s life there will be states of residual life left, perhaps the functioning of the heart, digestion, organic life, or cellular life. She continues, “Rather than categorizing all states as dead or alive it allows unhindered examination of the residual states as residual states. This opens up for inquiry what the appropriate behavior is toward particular states.””

This examination and inquiry occur in what Emanuel calls a bounded zone approach, which “identifies an observable state, complete with the physiological feature that may readily translate into criteria, and then asks what is the correct approach to it.”” Determining loss of life is not a subjective or criteria-less judg ment. Rather, the determination will seek to define upper and lower limits of forms of residual life and to determine the moral value appropriate to that stage of the loss of life.

Shifting to a kind of process model of death will make various demands on us. The model proposed by Emanuel, however, gives us a helpful way to begin such a transition by allowing us to “resolve the tension between conceptual understanding and real experience.” This is a major problem with our current understanding: many of us have had the experience of reluctantly recognizing that though the body of a loved one may be functioning biologically, the loved one is absent and will not return. In addition, this understanding helps us to “define cessation of life and identify appropriate moral behavior toward specified states.” Of critical importance is that this model not only recognizes that life is a value throughout the process of losing life, but it also affirms that different moral obligations are appropriate for the various stages.12

Finally, advances in biotechnology are creating significant moral questions. In particular, antiaging technology raises several questions in relation to death. As we attempt to expand the time we have as functioning adults, we may or may not alter the maximum life span of the human species (about 120 years of age). Alternatively, if we gain control over expanding the average life span, not just in a relative way against the maximum life span of 120 years (e.g., increasing average life span

incrementally to 90, 100, 110, and so on up to 120 years), but in an ultimate way, say to 200 or even a 1,000 years or more, what are the implications for human relationships? For economic and environmental sustainability? Or for our relationships with God? These philosophical, theological, and gerontological questions are intimately connected with our senses of mortality, including a sense of our human finitude as well as our relationship to future generations (e.g., generativity).

CONCLUSION

Discussions about the once seemingly simple or indisputable realities of life and death will continue. The President’s Commission started us on the way by codifying the debate of the last three decades. As Emanuel shows us, however, developments in technology as well as moral reflection of the value of life in various stages are calling us to a new debate and possibly a reconceptualization of death and dying.

Outside of defining death and its criteria, we face significant moral questions with respect to illness and dying. Among these questions are whether and to what extent we are obligated to provide (or to accept) medical treatments. Under what circumstances can we justify foregoing or withdrawing medical treatment? It is in the next chapter that we will discuss these and other questions.

DISCUSSION QUESTIONS

1. Why has defining death become so difficult?

2. What kinds of technical resources complicate defining death? How do they do this?

3. What are some of the social implications of redefining death?

4. Who should be responsible for redefining death? Who should be responsible for establishing the diagnostic criteria for death?

5. Does Emanuel’s understanding of death as a process of losing life help resolve problems such as those caused by the irreversible loss of the neocortex or Alzheimer’s disease?

NOTES

1. Daniel Callahan, The Troubled Dream of Life: In Search of a Peaceful Death (Washington, DC: Georgetown University Press, 2000).

2. Average life span, however, varies significantly around the globe. In 2002, average life expectancy at birth ranged from seventy-eight years in women who were born in developed countries to less than forty-six years for men in Subsaharan Africa. See World Health Organization (WHO), “The World Health Report 2003: Shaping the Future,” WHO: The World Health Report 2003, http://www.who.int/whr/2003/en/index.html, accessed January 9, 2008 (p. 4 of the PDF version).

3. Robert Veatch, Death, Dying and the Biological Revolution (New Haven, CT: Yale University Press, 1976), 21ff.

4. Ad Hoc Committee of the Harvard Medical School, “A Definition of Irreversible Coma,” Journal of the American Medical Association 205 (August 1968): 337-40.

5. Paul Ramsey, The Patient as Person (New Haven, CT: Yale University Press, 1970).

6. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Defining Death: Medical, Legal and Ethical Issues in the Determination of Death (Washington, DC: US Government Printing Office, 1981).

7. Ibid., 1-2. These considerations and definitions ultimately informed the Uniform Determination of Death Act.

8. David M. Greer, Panayiotis N. Varelas, Shamael Haque, and Eelco Wijdicks, “Variability of Brain Death Determination Guidelines in Leading U.S. Neurologic Institutions,” Neurology 70, no. 4 (January 22, 2008): 284-89.

9. Linda L. Emanuel, “Reexamining Death: The Asymptotic Model and a Bounded Zone Definition,” Hastings Center Report 25, no. 4 (July-August 1995): 27.

10. Ibid., 30, 31 (italics in original).

H. Ibid., 31 (italics in original).

12. Ibid., 34.

BIBLIOGRAPHY

Ad Hoc Committee of the Harvard Medical School, “A Definition of Irreversible Coma.” Journal of the American Medical Association 205 (August 1968): 337-40.

Buckman, Robert. How to Break Bad News: A Guide for Health Care Professionals. Baltimore: Johns Hopkins University Press, 1992.

Callahan, Daniel. The Troubled Dream of Life: In Search of a Peaceful Death. Washington, DC: Georgetown University Press, 2000.

Emanuel, Linda L. “Reexamining Death: The Asymptotic Model and a Bounded Zone Definition.” Hastings Center Report 25, no. 4 (July-August 1995): 27-35.

Greer, David M., Panayiotis N. Varelas, Shamael Haque, and Eelco E M. Wijdicks. “Variability of Brain Death Determination Guidelines in Leading U.S. Neurologic Institutions.” Neurology 70, no. 4 (January 22, 2008): 284-89.

Kibler-Ross, Elisabeth. On Death and Dying. New York: Macmillan, 1969.

President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Defining Death: Medical, Legal and Ethical Issues in the Determination of

Death. Washington, DC: US Government Printing Office, 1981.

Ramsey, Paul. The Patient as Person. New Haven, CT: Yale University Press, 1970.

Veatch, Robert. Death, Dying and the Biological Revolution. New Haven, CT: Yale University Press, 1976.

World Health Organization. “The World Health Report 2003: Shaping the Future.” WHO: The World Health Report 2003. http://www.who.int/whr/2003/en/index.html. Accessed January 9, 2008.

Youngner, Stuart J., Robert M. Arnold, and Renie Schapiro, eds. The Definition of Death: Contemporary Controversies. Baltimore: Johns Hopkins University Press, 1999.

INTRODUCTION

Sometimes, in spite of the best intentions and the best medical care, health care providers cannot cure a disease. Alternatively, a cure might be possible, but the cost to the patient in terms of suffering and pain might be too much for the patient to bear. Or, the therapies that are available may not offer the patient an outcome that is acceptable. These situations occur daily in most hospitals. The patient may be a newborn, an adolescent, someone in the prime of life, or an older person who is frail or becoming senile.

The question is, must providers initiate treatment or continue it once initiated? Several factors complicate the answer to this question. The first factor is the technological imperative, which states that if we can do something then we are obligated to do so. This perspective would tend to mandate always treating as long and as intensely as possible. The second factor is the culture of modern medicine, which sees death as the enemy we must combat at all costs. If one ceases treatment, one loses to death; therefore, one continues to the end: vive la resistance! The third factor is the idea that death “has been moved out of nature into the realm of human responsibility.”‘ Now that we can use technology or a therapy to make some difference in a patient’s life, we assume that if we do not intervene in that way, then we are responsible for what happens. No distinction is made between what happens in the world of nature and human action. Providing cardiopulmonary resuscitation (CPR) is an example of this: there is a presumption that providers must administer CPR when someone’s heart stops no matter what the burdens may be or how likely it is to succeed. But, if providers choose not to administer CPR, some may believe they are responsible for the death of the patient.

Despite these contemporary developments and perspectives, there is a tradition in bioethics that responds “No” to the question of whether we must initiate or continue treatment. That is, one may morally justify forgoing or withdrawing treatment. First, we will look at ethical issues in deciding whether treatment could be forgone or withdrawn. Second, we will examine the elements of the decision-making process even if the patient is incompetent.

ETHICAL ISSUES IN FORGOING AND WITHDRAWING TREATMENT

Ethical issues in forgoing and withdrawing treatment fall into three thematic distinctions. First, the ordinary-extraordinary means distinction serves as a way to understand one’s obligations to provide medical treatment. Second, the distinction between killing the patient and allowing the patient to die

operates as a general framework for understanding whether it is permissible to forgo or withdraw treatment. Third, the tension between a sanctity of life perspective and a quality of life perspective functions as a corrective balance to figuring out whether forgoing or withdrawing treatment is morally wrong or right.

Ordinary and Extraordinary Means of Treatment

These terms historically referred to a way of categorizing treatments or therapies in order to understand one’s obligations to provide (e.g., as a physician) and to accept (e.g., as a patient) medical treatment.’ On the one hand, ordinary treatments are those that are morally obligatory: they must be provided, and patients have a duty to preserve their lives by seeking them and accepting them. Ordinary therapies typically referred to medicines, treatments, or operations that offered a reasonable amount of benefit to a patient without excessive pain, expense, or other inconven ience. On the other hand, extraordinary treatments are those that are not morally obligatory: they are morally optional; they are supererogatory. Extraordinary therapies were those that, while offering only some or little benefit, were very costly, very painful, and exceptionally inconvenient.’ The standard moral rule was that one was obligated to use only those treatments that were ordinary; otherwise, too high an ethical standard would be imposed on individuals.

There is much confusion here, however. One can interpret the ordinary-extraordinary distinction in a variety of ways. Take, for example, an empirical interpretation and a moral interpretation. An empirical interpretation would indicate that an ordinary treatment is readily available, relatively inexpensive, likely to work, and no longer experimental. A ventilator is an example of a modern, empirically understood ordinary treatment. Furthermore, empirically speaking, an extraordinary treatment is not readily available or rare, relatively expensive, not likely to work, and possibly experimental. In contrast, a moral interpretation would indicate that an ordinary treatment is an intervention wherein the benefits are likely to outweigh the burdens. Some refer to this as a proportionate treatment. Morally speaking, an extraordinary treatment is an intervention wherein the benefits may not or do not outweigh the burdens. These treatments are disproportionate. An example is a ventilator that is no longer helping the patient reach a meaningful level of recovery.

Notice that depending on the interpretation, a ventilator can be empirically ordinary or morally extraordinary. The judgment of whether the benefits outweigh the burdens should (a) always be made from the patient’s perspective and (b) always be relative to a particular treatment. Technical interventions in medicine have complicated this traditional distinction, particularly with respect to its use in evaluating treatment modalities. The major problem here is that what is medically or empirically routine becomes confused with what is morally ordinary-they are not the same. For example, a Jehovah’s Witness likely sees a blood transfusion as extraordinary because the religion prohibits it under penalty of eternal damnation. Yet, for most, it is both medically routine and typically morally ordinary.

Killing the Patient and Allowing the Patient to Die

One can base decisions to forgo or withdraw medical treatment on a variety of principles or values. For example, a ventilator may no longer be beneficial or serve the patient’s best interests; therefore, one may withdraw the ventilator. Recognizing one’s obligations-either as a provider of

health care or as a patient-informs these decisions and the moral judgments about them. Nevertheless, contemporary end-of-life decisions involving forgoing and withdrawing treatment demonstrate a tension between the rights of patients to refuse treatments and the obligations of health care professionals to provide them. A key ethical issue is that moral arguments rest on the importance of one’s intent in morality and, consequently, a distinction between killing the patient and allowing the patient to die. Thus, when forgoing or withdrawing treatment is morally acceptable, the intent is never the death of the patient, but rather the cessation of harmful and/or nonbeneficial treatments or technology that is prolonging the natural dying process. This distinction is controversial, and many do not share the same perspective on the role of intention.

If one concludes that the treatment is extraordinary then the treatment may be forgone or withdrawn. Generally speaking, the moral arguments for either forgoing or withdrawing treatment are identical. That is, the reasons for not initiating a ventilator frequently are the same as the arguments for withdrawing it. These arguments have to do with the patient’s values, the expected benefits of the action, or the burdens of the treatment-that is, determining whether the treatment is morally ordinary or extraordinary.

While moral arguments may be parallel in forgoing and withdrawing treatment, there are significant psychosocial differences between them. These might be that in the patient, family, and medical team, a therapy has aroused certain expectations; momentum has developed and intensified during the treatment; and, all too common a party is unwilling to admit failure. Some even argue that seeing death in this context as a failure is problematic: death is not necessarily the enemy-suffering is a more insidious enemy. Thus, while most will frequently agree that a therapy is doing little, if any, good for the patient, disagreement will frequently arise about the appropriateness of withdrawing the therapy, primarily because it signifies the inability of anybody to do anything truly therapeutic for the patient.

The Sanctity of Life and the Quality of Life

In addition to the distinctions between ordinary and extraordinary treatments and between killing and allowing the patient to die, another thematic distinction and set of ethical issues pertain to a perceived tension between the sanctity of life and the quality of life. To begin, the term sanctity of life refers to the inviolable value of human life. According to a sanctity of life ethos, one must protect human life at almost any cost; one must never, under any circumstances, deliberately and intentionally attack and end human life. An example of the sanctity of life ethos for some is the duty to preserve life in patients who are in a permanently unconscious state by providing medically assisted nutrition and hydration. Although the term derives from theological perspectives in bioethics, it and comparable concepts have experienced wide appeal outside of religious circles. Some may prefer a different term, however; for example, some may refer to a kind of human dignity. Sanctity of life positions would tend to rank human biological life as among the highest values, if not the highest value.

Next, the term quality of life can mean many different things, but it generally refers to a measure of the value of personal life, not purely biological life. According to a quality of life ethos, one may encounter circumstances in which the obligation to protect and preserve human physical life no longer exists. An example of a quality of life ethos is the idea that the duty to continue with chemotherapy in a patient with advanced cancer no longer exists if the chemotherapy causes more suffering than benefits for the patient and that the patient’s entire life is subsumed by the struggle to continue

physical life. The notions of sanctity of life and quality of life tend to inform moral arguments over forgoing and withdrawing medical treatments in opposing ways. Thus, someone who seeks to protect the sanctity of life of the patient will likely disagree with someone who recognizes the importance of the quality of the patient’s life.

Notwithstanding this opposition, James J. Walter has argued that this tension is misleading: the values both terms-sanctity and quality of life-reflect are categorically different values;4 Walter therefore seeks to reconcile these positions. To that end, he offers this understanding of quality of life:

the word “quality” in the phrase quality of life does not and should not primarily refer to a property or attribute of life. Rather, the quality that is at issue is the quality of the relationship which exists between the medical condition of the patient, on the one hand, and the patient’s ability to pursue life’s goals and purposes (purposefulness) understood as the values that transcend physical life, on the other.’

Nevertheless, the debates between the sanctity of life proponents and the quality of life proponents have developed and merged into other debates. One such example is the debate between the right to life position (reflecting a sanctity of life ethos) and the right to die position (reflecting certain forms of a quality of life ethos). The right to life position argues that life is the most important value and if we do not protect and defend that value against assaults, then all else stands to be lost. When human life loses its value, then we also endanger other institutions and values. The value of life and the dignity of the person stand at the center of the moral and cultural universe, and if they are degraded or disregarded, we have lost our moral foundation.

However, many claim that a right to die-or, more precisely, a right to refuse treatment-is also important; they base such a claim on respecting the patient’s quality of life. How people live or the conditions under which they live is often more important than whether they live. The defense in war of the values of democracy and liberty as well as human dignity itself is surely an example of occasions when some values are as important as or more important than life itself.

THE CASE OF TERRI SCHIAVO

One of the most dramatic and drawn-out cases in recent years was the case of Terri Schiavo.6 In this case, we were witness to the intensity of some of the aspects of the debates about endof-life decision making. For about fifteen years, Mrs. Terri Schiavo remained in a permanent vegetative state (PVS), also called a state of post-coma unresponsiveness, until Michael Schiavo, her husband, requested that she be removed from medically assisted nutrition and hydration (ANH) and allowed to die. Although many details of the case remain elusive or misrepresented, Mrs. Schiavo suffered a heart attack in 1990 that caused her to enter a vegetative state shortly thereafter due to lack of oxygen to her brain. In 2000, Mr. Schiavo requested that her feeding tube (a way to provide ANH) be removed. When the Circuit Court judge in Florida agreed with Mr. Schiavo, Mrs. Schiavo’s parents- the Schindlers-initiated a lengthy appeal process. Additionally, lawmakers and opinion leaders made several legislative initiatives aimed at protecting Mrs. Schiavo and other persons in her condition. Finally, Mrs. Schiavo’s feeding tube was removed and she died on March 31, 2005, at forty-one years of age.

In the debates about Mrs. Schiavo’s case, we can see the above distinctions demonstrated. For one, Catholic commentators argued whether medically assisted nutrition and hydration provided through a feeding tube for patients in a PVS was ordinary or extraordinary. Two, bioethicists and many others argued over whether removing the feeding tube was killing Mrs. Schiavo by starvation or was allowing her to die. Although patients in a PVS are not imminently dying, they are unable to participate actively and independently in the eating process. Another complication is that patients in PVS cannot experience starvation. Because these patients lack higher brain function, their bodies may register the neurological signals for starvation, but there is no consciousness to process those signals as the experience of starvation (or thirst). Many would claim that removing the feeding tube was euthanasia (see chapter 10); others would say that it is compassionate care and would allow Mrs. Schiavo to die peacefully. Finally, the debates more or less unfolded along the lines of those who embraced a sanctity of life position and those who held a quality of life position. For the former, we had an obligation to protect Mrs. Schiavo’s life and to provide ANH no matter how long she lived. For the latter, we were prolonging Mrs. Schiavo’s life, which no longer had any personal dimension to it. Because Mrs. Schiavo lost her higher functions, she could not pursue any of life’s values. In this sense, Mrs. Schiavo did not have any quality of life. She simply remained in bed or was set up in a chair by caregivers. (Many, including Mrs. Schiavo’s parents, claimed that Mrs. Schiavo could have benefited from brain injury rehabilitation and therapy. They alleged that she would respond to lights and other stimuli. Patients in a PVS, however, demonstrate certain behaviors that may be mistaken for purposeful behavior. For example, PVS patients have sleep-wake cycles, they react to noxious stimuli, which only requires an intact spinal cord, and their bodies are able to perform autonomic functions like respiration, circulation, and digestion. Mrs. Schiavo’s autopsy revealed that her higher brain had deteriorated significantly; no therapy or rehab would have likely been helpful in her case.)

As bioethics emerged as a recognizable field, the Catholic tradition continued to provide reflections on many matters involving end-of-life decisions. The decision to forgo or withdraw ANH from patients has received attention alongside the debates in Mrs. Schiavo’s case. In March 2004, Pope John Paul II delivered an allocution entitled, “Care for Patients in a ‘Permanent’ Vegetative State.” In this speech, the Pope declared that patients in a vegetative state ought to receive nutrition and hydration:

I should like particularly to underline how the administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act. Its use, furthermore, should be considered in principle ordinary and proportionate, and as such morally obligatory insofar as and until it is seen to have attained its proper finality, which in the present case consists in providing nourishment to the patient and alleviation of his suffering!

This raised questions, however, pertaining to how Catholic health care services in the United States should understand Directive 58 in the Ethical and Religious Directives for Catholic Health Care Services (4th ed., 2001). Directive 58 states, “There should be a presumption in favor of providing nutrition and hydration to all patients, including patients who require medically assisted nutrition and hydration, as long as this is of sufficient benefit to outweigh the burdens involved to the patient.”‘ Specifically, the allocution seemed to call into question the “presumption,” which suggested that it was no longer a presumption but a requirement to provide nourishment and hydration to patients

in a PVS.’

Thus, in response to the questions raised, the United States Conference of Catholic Bishops (USCCB) posed two questions in the form of an official submission, called a dubium (“doubts”), to the Sacred Congregation for the Doctrine of the Faith (CDF), the office of the Roman Curia responsible for moral matters. The CDF replied with its answers and a commentary to those answers (quoted here verbatim):

First question: Is the administration of food and water (whether by natural or artificial means) to a patient in a “vegetative state” morally obligatory except when they cannot be assimilated by the patient’s body or cannot be administered to the patient without causing significant physical discomfort?

Response: Yes. The administration of food and water even by artificial means is, in principle, an ordinary and proportionate means of preserving life. It is therefore obligatory to the extent which, and for as long as, it is shown to accomplish its proper finality, which is the hydration and nourishment of the patient. In this way, suffering and death by starvation and dehydration are prevented.

Second question: When nutrition and hydration are being supplied by artificial means to a patient in a “permanent vegetative state,” may they be discontinued when competent physicians judge with moral certainty that the patient will never recover consciousness?

Response: No. A patient in a “permanent vegetative state” is a person with fundamental human dignity and must, therefore, receive ordinary and proportionate care which includes, in principle, the administration of water and food even by artificial means.”

In addition to reaffirming the pontiffs allocution, the CDF “Commentary” pointed out three conditions under which medically assisted nutrition and hydration could be removed from patients in a PVS:

1. Physiological futility: one is not obligated to provide medically assisted nutrition or hydration when the patient’s body can no longer assimilate the substance(s).

2. Excessive [Physical] Burdensomeness: one is not obligated to provide medically assisted nutrition or hydration if such interventions cause, for example, significant physical discomfort.

3. The Principle ad impossibilia nemo tenetur: No one is obligated to do the impossible. Therefore, one is not obligated to provide medically assisted nutrition or hydration “in very remote places or in situations of extreme poverty,” where the provision of “food and water may be physically impossible.””

Accordingly, the Catholic Health Association of the United States issued the following statement in response to the CDF answers and commentary:

The CDF document makes two important points. First, the provision of artificially administered

nutrition and hydration to patients in a vegetative state is morally obligatory except when they cannot be assimilated by the patient’s body (and, hence, don’t achieve their purpose) or cause significant discomfort. Second, artificially administered nutrition and hydration cannot be discontinued for a patient in a persistent vegetative state even when physicians have determined with reasonable certainty that the patient will never recover consciousness. This is due to the fact that the person in a persistent vegetative state retains his or her fundamental human dignity and, therefore, must be provided ordinary and proportionate care which includes nutrition and hydration.12

Although the case of Mrs. Schiavo involves specific circumstances-the PVS condition and the question about ANH-her case also highlights key elements of forgoing or withdrawing medical treatments in general. As biomedical technology becomes more sophisticated, we will have to reexamine what is medically and morally ordinary or extraordinary, we will have to consider what constitutes killing or allowing the patient to die, and we will have to reflect on how to balance the perspectives of sanctity of life and quality of life.

In his book Contemporary Catholic Health Care Ethics, David E Kelly argues that beginning in the 1990s one could speak generally of an American consensus in end-of-life decision making, including decisions to forgo and withdraw treatments.” Thus, although there remain controversial aspects to this consensus as the Schiavo case demonstrates, one may choose to forgo or withdraw medical treatment, which one could morally justify with reference to what Kelly described as three pillars: (1) the ordinary-extraordinary distinction, killing-allowing to die distinction, and right to autonomy and the liberty to decide for oneself.” Thus, in health care decision making, especially in decisions to forgo or to withdraw treatment, one needs to consider carefully the elements of those decision-making processes. Therefore, we will now examine some of these elements. We covered aspects of patients making their own decisions in chapter 4 (e.g., under the concepts of informed consent and paternalism). Here, we will look at decision making on behalf of patients. Thus, we will look at two different surrogate decisionmaking situations: decision making for incompetent adult patients and for never-competent newborn patients.

Decision Making for Incompetent Adult Patients

In health care, people often face situations in which patients are no longer able to make decisions for themselves. These are adult patients who were once able to make their own decisions but have since lost that capacity and are considered incompetent. Thus, the decision-making process requires others to participate. When another person makes decisions for the patient, that person is called a surrogate decision maker (or proxy decision maker). Sometimes patients may legally identify who they want as a surrogate decision maker; this person is known as the patient’s health care agent and has the patient’s durable power of attorney for health care. Other times, patients have not identified anyone. Health care providers must then enter into conversations with family members or friends to determine who should be the patient’s surrogate and to begin the decision-making process. Occasionally, the state may assign a person to make decisions on behalf of an incompetent patient: i.e., a guardian or a conservator. Finally, some patients may not have any friends, family, or a conservator. Some commentators refer to this kind of patient as an unrepresented patient; in this situation, elaborate group-based decision-making mechanisms can be used to minimize conflicts of

interest and to serve as advocates for these very vulnerable Whoever a surrogate decision maker is, there are several models for such decision making, and there are standards we must use in considering any evidence that a patient may have to have help in the decision-making process.

Decision Making for Never-Competent Newborn Patients

The birth of a baby is one of the most profound and stirring human experiences we can have. Even though we know the biology of fertilization and development, the birth of a baby is still a profound mystery. It is also a significant life event for the mother and father. Parenthood is a new dimension of their relationship and helps evoke a deeper commitment to each other as well as a commitment to the new child. Sometimes all does not go as expected, however. The child that the parents desire is not the child they receive. There may be, for example, a premature birth, and the newborn may not be physically mature enough to survive outside the womb. Or the infant may have a physical impairment or be born with a disease. In this time of severe psychological trauma and grief, critical decisions must be made.

In this context, parents and health care providers are thrust into difficult situations requiring decisions, which may lead to the death of the newborn. Some commentators suggest that parents may not be emotionally stable enough to make decisions in the best interests of their newborn. Others contend that physicians should not impose their own medical morality onto the care of the newborn. Thus, a major issue in decision making for newborns is defining the roles and how much authority parents and doctors have. Furthermore, another difficulty is that newborns have never been competent nor have had decision-making capacity. In decision making for incompetent adult patients, one can reflect on the life that the patient lived and discern, to some extent, the values and preferences of that patient. For newborns, however, there is no set of life values to which surrogates can turn, and there is no advance directive; there has never been any expression of that individual’s values or preferences. Decision making for never-competent patients is very different than decision making for once-competent patients.