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Copyright © eContent Management Pty Ltd. Health Sociology Review (2009) 18: 423–433

ABSTRACT

Mair Underwood Australasian Centre on Ageing

The University of Queensland, Australia

Helen Bartlett Monash University Gippsland Churchill, Victoria, Australia

KEY WORDS

Sociology, life extension, public policy, community

Life extension technology: Implications for public policy and

regulation

Introduction

T his paper focuses on what has been termed ‘strong life extension’ (or the dramatic increase of both life

expectancy and life span) rather than ‘weak life extension’ (increased life expectancy with life span remaining unchanged) (Moody 2001/2002:33–34). Strong life extension is currently not possible but considerable efforts are currently being directed towards this goal. There is a great amount of debate regarding the possible outcomes of these efforts. Some suggest that strong life extension is unlikely if

not impossible (Hayfl ick 2001), while others are very optimistic. The 10th Congress of the International Association of Biomedical Gerontology (to which issue 1019 of the Annals of the New York Academy of Sciences was devoted) was entitled: ‘Why genuine control of aging may be foreseeable’. Life spans of 350 or 500 years have been predicted and some suggest that we may achieve human immortality (see Holden 2002; Juengst et al 2003). Further evidence of the optimism of the scientifi c community is demonstrated by the fact that 60 demographers, gerontologists and ageing researchers made estimates of the life expectancy of a child born in the year 2100 that averaged 292 years (with estimates up to 5000 years being made) (Richel 2003). Some suggest that success will occur in the near future and may only be 20–40 years away (e.g. de Grey et al 2002; Klatz in Beaubien 1994). For a more detailed discussion of predictions see Underwood et al (2009a).

While commentaries about life extension from biogerontologists, demographers, geneticists and ethicists have increased in recent years, these have paid little attention to the public policy implications of life extension or the perspectives of community members and policymakers themselves. This paper draws on the fi ndings from a three-year research project about strong life extension which involved interviews with community members, and state and federal policymakers. The paper explores and compares the views of community members and policymakers about policy priorities arising from life extension, and examines these within the context of existing literature and available evidence. Thus the paper provides an important evidence base to inform policy development on life extension and argues that general community perspectives are important to consider in public and policy debates about the development and regulation of life extension.

Received 18 February 2009 Accepted 1 May 2009

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Even if life extension became possible, a number of commentators suggest that the community would fi nd it inherently undesirable (Fukuyama 2002; Kass 2002). Others, on the other hand, have assumed a high (Harris 2004; Stock 2004) or near universal demand (Olshansky et al 2002; Solomon 2006). However, these assumptions are not empirically supported.

There is some evidence regarding the potential demand for life extension technologies. Several studies of small community samples have found that some community members are interested in life extension (Ipsos MORI 2006; Lucke et al 2006). However, the most in-depth evidence thus far has emerged from a recent study conducted by the authors, part of which is reported in this paper. This study has demonstrated that 11 of 14 researchers in ageing expressed an interest in life extension (Underwood et al 2009a) as did 32 of 57 community members (Underwood et al 2009b).

If life extension may be a possibility in the near future, and many people would avail themselves of this opportunity, what would be the consequences for society? Furthermore, what would the policy responses be? Many academics foresee a need to regulate life extension based on existing problems with the regulation of ‘anti-aging’ technologies (Mehlman et al 2004; Perls 2004; Reisman 2004). Louria (2005:5319) suggests that if we do not start to plan and act now, the likelihood of successfully coping with the consequences of life extension will be signifi cantly reduced, and ‘we are likely to be dragged, willy-nilly, to our demographic destiny’ which almost certainly will include some very unpleasant surprises. The results of this failure to act could ‘go the way of cloning, that is, we will have the technology before we’ve thought about it’ (Davis in Barinaga 2001:1), or wildly false claims about the technology may lead to serious and inappropriate use, as has been the case with cosmetic surgery (Ring 2002). The policy implications of life extension may dwarf those of other biomedical issues (Juengst et al 2003) and researchers have suggested that it is not

too early to consider policy responses (Lucke et al 2006).

The aim of this paper, therefore, is to help inform discussions about life extension and appropriate policy responses. It aims to take such discussions beyond the speculation of academics (e.g. Solomon 2006), and provide an evidence base for such discussions that is based on community and policymaker perspectives. The research presented here specifi cally addresses the following questions: 1. How do community members and

policymakers envisage the policy priorities resulting from life extension?

2. How do policymakers envisage their role in life extension policy? This paper builds on the preliminary results

regarding the community perspective of life extension presented in Underwood et al (2007) and introduces the perspective of policymakers to the discussion.

Methods The project from which these results are drawn consisted of two stages: a qualitative stage that identifi ed the issues of importance; and a quantitative stage based on the results of the fi rst stage and that surveyed a larger, more representative sample of the population.

This paper focuses on the fi ndings from the fi rst phase of the study which comprised in- depth interviews with a sample of community members and a sample of policymakers. As slightly different methods were used in each case, these will be discussed separately.

Community sample Individual interviews Individual interviews were conducted with 57 participants, each lasting 1.25 h on average. Efforts were made to include individuals of different ages and thus participants ranged from 20–89 years. Participants were recruited through posters placed around the University of Queensland campus and through the 50+ Registry (a pool of research volunteers) of the Australasian Centre on Ageing at the University of Queensland.

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Focus groups Eight focus groups (total participant N = 72) lasting between 1 and 1.5 h were conducted. Four of the focus groups were conducted with general community members who were not specifi cally targeted: • two groups of older community members

(50+) • two groups of younger community members

(18–49) The other four focus groups were conducted

with selected groups that were believed to hold strongly contrasting attitudes to life extension: • a student evangelical Christian discussion

group; • a Baptist Bible discussion group; • a group of self-identifi ed ‘transhumanists’ (that

is, individuals who affi rm the desirability of fundamentally improving the human condition through the development of technologies to eliminate ageing and to greatly enhance human intellectual, physical, and psychological capacities); and

• a group of self-identifi ed Raelians (individuals who advocate the use of new medical technologies, such as stem cells and cloning, to ‘liberate’ humans from ageing, disease and death, and who also believe in extraterrestrial origins of the human race). This paper details participant responses

regarding the availability and regulation of life extension. In many cases the issues described in this paper were raised by the participants in a spontaneous manner. For example, many participants discussed their thoughts on the availability of life extension after very general lines of questioning, such as ‘what would be the consequences of life extension for society?’ If the issues were not raised by participants themselves, more specifi c lines of questioning were employed, such as ‘how would we decide who had their life extended?’ and ‘who should control a life extension technology if one was to become available?’

Policymaker sample Five policymakers were interviewed: one was from the Commonwealth Department of Health and Ageing, and four were from State

Government Departments of Health, and Departments of Community. These policymakers were selected for their leadership roles in health and/or ageing related issues.

Interviews with policymakers were similar to those conducted with community members, but contained more targeted questions such as ‘what would be the policy implications of life extension?’ and ‘how would the advent of life extension change your job?’

Interviews were conducted face-to-face and lasted an average of 53 min. All participants provided their informed consent in writing at the time of the interview. The study received ethical approval from the Behavioural and Social Sciences Ethical Review Committee of the University of Queensland. Interviews were transcribed verbatim and entered into NVivo 2 (1999 QSR International), a qualitative data analysis program to aid the coding and retrieval process. Responses from the community members were analysed separately according to the general line of questioning (see Underwood et al 2009b for a more detailed report of the community study analysis). The data were further interrogated to identify emerging policy issues and potential policy responses. The interview framework for the policymakers also guided coding of this set of data and enabled key policy issues and potential policy responses to be identifi ed. Similarities and differences between the two groups were then explored and emerging themes formulated.

Results The results are divided into two sections. The fi rst presents the issues of importance to community members and policymakers speaking as members of the community. The second section details the issues that were specifi c to policymakers. Quotes are provided from the qualitative data to illustrate the issues (followed by participant number, age and gender).

The community perspective This section of the paper details the issues common to both general community members and policymakers. The issues of most importance

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would work. If it works like most other things [Participant 39 – 40, woman].

Some participants felt it sensible to allow market forces to determine availability, as it would be very diffi cult for the government or the world’s resources in general to support a large number of individuals living extended lives. However, most thought that allowing cost to determine access would be extremely negative. They felt that it would exacerbate existing class divides:

It just makes a bigger divide between rich and poor. For people without access to funds to be able to get the technology, then it’s almost like you’ve got different classes in society, but almost worse than that … It just sets up very different dynamics to have one population, perhaps living twice as long and then another only living half as long. If they’re discriminated against, then it actually may make their lives worse than it would have been before this happened. So you get an underclass of people [Policymaker 2 – 51, woman].

Not only would life extension increase the divides in terms of access to the technology, but it would also allow those who could extend their lives more time to acquire wealth:

I really can see huge economic disparities manifesting, because as I say, people have just got that much more time to accumulate wealth. Those who do have that wealth accumulated, of course, can buy the top life enhancement technologies, and then they’ll live longer and accumulate more wealth, pass that on to their siblings and relations, and, people who have potential won’t see it, because those resources have been taken by other people. It’s parasitic, for want of a better term [Participant 48 – 37, man].

They suggested that the divides exacerbated by life extension could be resented by some:

… There could well be a backlash against that [unequal access to life extension], from those who couldn’t afford it. They wouldn’t be very happy. How far they take it, who would know [Participant 23 – 75, man].

were the availability, distribution, control and regulation of life extension. Other issues of importance, such as overpopulation, economic and environmental issues, were also raised.

The availability and distribution of life extension As previously reported (Underwood et al 2007), many community members thought that a life extension technology should be available to all, and that it should be an individual choice. They felt that everyone should have equal opportunities in relation to life extension:

… The strong extension to me says ‘who is going to get this?’ … We have a close relationship with a bunch of Sudanese refugees. I’m no more important than them in this world. I don’t see why I should have some kind of right to more of the world’s resources and time than they do [Participant 18 – 47, woman].

Many participants even suggested that governments should subsidise the provision of life extension through existing structures such as the ‘Pharmaceutical Benefi ts Scheme’ (or ‘PBS’) or ‘Medicare’:

The only thing that I could see that would really be fair would be to give it to something like PBS. Everybody gets access to it; everybody gets it reasonably cheaply [Participant 44 – 35, man].

However, they acknowledged that while equal access was the ideal, there was little chance that this would become the reality. Rather, they saw a continuation of the status quo:

History of medical science tells me that it [the availability of life extension] would be on a cost basis unless it’s some marvellous vaccine that we all need and then it’s free. So the people that are leading miserable and impoverished lives now are going to continue to lead miserable and impoverished lives, while people that can afford to live for another 200 years will be able to buy the technology. That’s my sceptical understanding of how that

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Generally, participants felt that market forces would determine the availability of life extension, and that there would be little room for considered decision making:

I think it’s going to be those who can afford it will get it. I don’t think it’ll have much to do with ethics. I think ethics pretty much plays a second place to the market [Participant 48 – 37, man].

However, participants had some suggestions if attempts to control the availability of life extension were to be made. For instance, some believed that those who were already living unhealthy lives (e.g. smokers and the drug- addicted), criminals and anti-social people should not be given the opportunity to extend their lives. They also felt that those who did not have the mental capacity to make such a decision (e.g. people with dementia) should be excluded.

If access to life extension had to be limited, some participants felt it should be the ‘great minds’ that were given priority. Several participants stated that researchers such as Professor Ian Frazer (Australian of the Year in 2006 for his work developing a cervical cancer vaccine) should be given priority. Likewise, several participants mentioned that the ‘Einsteins’ of the world should have their lives extended. It seems that ‘Einstein’ has become a general term used to describe anyone who has exceptional knowledge and skills and could make a signifi cant contribution to humanity. Participants felt that those most likely to make a major contribution to society should be prioritised over others when it came to the distribution of a life extending technology.

In summary, participants stated that ideally life extension should be available to all, but acknowledged that in reality it would only be the wealthy who would have access (at least initially). They felt that this would exacerbate divides, and had the potential to cause resentment. Some suggested that if access to life extension had to be limited, it should be on the basis of an individual’s health and potential to contribute to society, rather than on their ability to afford the technology.

Participants questioned whether those who could afford a life extension technology were necessarily those who would do the most social good during an extended life. For example, they felt that those who could afford it, for example ‘Britney Spears’, ‘Rupert Murdoch’ and ‘Kerry Packer’, may not be as deserving as the ‘Mother Teresas’ of the world.

Participants also questioned whether allowing cost to determine the availability of life extension would be of the most benefi t to the species:

… it’s certainly not survival of the fi ttest, it’s survival of the wealthiest or who’s got the family with the right connections to get the doctors that can get you the surgery and stuff like that. So it’s not healthy people necessarily surviving, it’s just those in socioeconomic circumstances that are conducive to that sort of thing [Participant 48 – 37, man].

Natural selection according to Darwin is supposed to have served us very well. Human kind has been involved in unnatural selection for a period of time through contraception. That’s been a great thing. But I mean I don’t know how far you can extend unnatural selection for the biological good and the social good of a species. It’s untested waters … The only reason I suspect you will keep more and more of these people alive is because of capacity to pay which may not be the best selective process for the future good of humanity [Participant 20 – 50, man].

While participants believed that life extension would initially only be available to a select few (‘the rich’), they suggested that eventually it would become available to a wider population:

It’s like Playstations, when it fi rst comes out it’s all expensive but then it comes down in price [Participant 31 – 24, man].

At fi rst it may only be available to the rich but eventually it’ll trickle down and be available to the poor [Participant 28 – 24, man].

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Some recognised that while they expressed idealistic sentiments, the reality was likely to be very different:

Ideally, I suppose, even though I know bureaucracies are ineffi cient in themselves, I think they’d be a little more safe if you gave it to the public health system than to private … but I know that won’t happen. I know who can afford it will get it [Participant 48 – 37, man].

Community members were concerned with the availability and distribution of life extension, and saw this as the main regulatory issue. However, some participants questioned the possibility of controlling the availability of life extension:

Participant: I don’t know whether it should be allowed or not because in the right hands, then it’s a very powerful tool that can help a lot of people. In the wrong hands, then you could just have a horrible, horrible world of disgusting people who get hold of it and they’re the ones that control everything. It would depend on how it was regulated.

Facilitator: What do you think could be done to regulate it?

Participant: I don’t know if you could, because if one person makes it possible, then that means someone else will fi gure it out and it will go into the wrong hands. Like nuclear weapons and everything. They haven’t been used yet, but there’s suspicions that they could be in the hands of the wrong people. Maybe it’s not possible to be regulated. I think maybe it shouldn’t be made just in case something goes wrong [Participant 41 – 22, woman].

… we’ve seen what happens when we’ve had regulatory bodies in terms of things like plastic surgery … they’ve just broken down and people are going willy nilly and having their plastic surgery … people can quite happily trot themselves off to the doctor with a couple of thousand dollars and say, well, you know, I want my eyes lifted

The control and regulation of life extension Our report of the preliminary fi ndings of this study stated that community members were reluctant to trust the government with the responsibility of controlling life extension technology (Underwood et al 2007). Further exploration of this issue revealed that while many community members were reluctant to trust the government, some of these participants also saw no other option.

Facilitator: If a way to extend life were to be developed, who should control it?

Participant: You can’t trust the government. I don’t know. You can’t actually trust anyone with that sort of thing … But if we assume that people will actually hold responsibility of that, then the government I guess [Participant 53 – 23, man].

Facilitator: Who should control these [hypothetical life extending] technologies?

Participant: Um well, there’s a question. Um, I don’t know, because I don’t think governments should … Maybe it has to be governments, I can’t think of anyone else [Participant 7 – 61, woman].

To say that participants recognised no other group that could potentially control a life extension technology is not exactly true. Several recognised the potential for private industry to step in, but saw public sector control as preferable:

I’d be very concerned about private industry owning and controlling something like that because I just can’t see how it could ever be equitably done, unless you had someone like Bill Gates or a group of Bill Gates’. If you had the sort of fi nancial power that he’s got, and his preparedness to give away some of his money, as he’s doing with the Gates Foundation now … But that’s a pretty signifi cant change in the way the world works. So I’d have to say that government would have to control that sort of technology [Policy 3 – 54, man].

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different meaning. It would really, really turn the economic world inside out [Participant 45 – 45, man].

I mean to say; really and truly it’s a benefi t for some people to die, isn’t it? For the community, for the pensions. Who’s gonna provide pensions at 150? [Participant 56 – 87, woman].

I think another thing is work. How long would we have to work? Like would that mean we’d have to work longer and retire later to be able to support ourselves [Focus Group 5 – Christian].

The policymakers envisaged the same issues arising:

Imagine the pension. They’d have to change the age, they’d have to do another calculation, otherwise all these people would be on the pension, living and living and living and government would go broke [Policy 2 – 51, woman].

Obviously, extending my life by another 50 years would really stuff up my superannuation planning [Policy 3 – 54 man].

The policymakers’ perspective

Policymakers raised certain issues that were not discussed by general community members. They focussed on their role should life extension eventuate, and on how the government is unprepared to deal with life extension.

Policymakers felt that they had a responsibility to ensure that community members made their own informed decisions about safe products, but believed they could not control the distribution of such a technology:

It’s impossible in our world I think to decide that individuals can’t access it [a life extension technology] because if individuals can’t access it here they’ll go to places where they can access it. We know that from a whole range of other technologies which we’ve tried to

and this, that and the other thing, and the decision is only made between the person and the doctor, the patient and the doctor … eventually I think consumption will take over and commodify these sorts of processes and you won’t be able to control it anyway [Focus Group 8 – Younger community].

Broader policy implications While community members were most concerned with controlling the distribution of life extension technologies, they also mentioned other issues of relevance to policy. Participants did not describe these as policy issues, but rather as societal issues that ‘we would need to deal with’. These included overpopulation, and associated issues such as infrastructure, resources, and the environment:

I think it would probably be a negative thing to have an extremely extended life- span because most places we live in now are overpopulated as it is. They cannot continue to sustain more and more people [Participant 32 – 24, woman].

So that [life extension] means you get a greater demand on the infrastructure like, you know, housing, roads, transport, all of those things [Participant 49 – 20, man].

I think the problem is the population growth around the world, how it’s going to affect the environment? That’ll be the big problem [Participant 52 – 86, man].

I am concerned about the resources in the world that will sustain people who do make that choice if it’s available. I think it could become very dicey because people are just using everything up [Participant 13 – 52, woman].

Participants were also concerned about economic and workforce issues, such as pensions, superannuation, and the age of retirement:

Certainly I can see economic chaos for a while, life insurance for a start and people’s investments would all have a completely