Should we be able to know how long we have to live?

A new test, soon to become available to the general public in the UK, can tell people how fast they are aging, thereby allowing them to estimate their life expectancy. The test, which should be available for €500 (£435), is based on an analysis of the telomeres, small protective caps at the extremities of a person’s chromosomes. Short telomeres are associated with a shorter lifespan and indicate a more advanced biological age (by contrast with the person’s chronological age). The test has been described as opening an “ethical Pandora’s box”. Concerns have been raised regarding people’s possible reaction to information about how long they still have to live. Some are also worried that the test might be used by organizations selling dubious “anti-aging” remedies to attract potential customers, and that insurance companies might demand to have access to such information before providing cover, requiring people with shorter telomeres to pay higher premiums. Should the prospect of the public availability of such a test concern us, and should we try and restrict it?

Even though this test needs to be further refined so as to make it more precise, it seems to me that we should welcome its arrival. There are good reasons for wanting to estimate our life expectancy, and the methods available so far are not as accurate as we might wish. The average life expectancy in our country of residence might not apply to us depending on our genetic constitution and individual lifestyle. Looking at how old our parents lived to be is also a somewhat crude method. This new test promises to offer us more reliable data on this matter, allowing us to plan accordingly for the future and to make changes to our lifestyle if necessary (there is indeed evidence that telomere length is not determined just by heredity). It is true that the prospect of insurance companies pressuring people to take such a test when they otherwise would not have wanted to, and requiring those with short telomeres to pay higher rates for their insurance cover, is somewhat disturbing. We might note, however, that insurance companies are already allowed to ask for information about a person’s health that might lead her to pay a higher premium – for instance whether she has diabetes. And while the person might sometimes be held responsible for her condition (e.g. if she is a smoker), in other cases this will not be true. If we wanted to prevent insurance companies from demanding access to the results of this new test, we would thus need to find grounds for treating that case differently from the diabetes one. Admittedly, such grounds might be available if it turned out that people who learn that their life expectancy is shorter than they thought experience a significant decrease in their subjective well-being.

What if it were not practically feasible to prevent insurance companies from using the results of such a test once it became widely available? Rather than trying to simply ban the test, we could promote fairness by having e.g. the insurance fees of people with short telomeres publicly subsidized (provided there were no reason for thinking that their telomere shortening was the result of their own chosen lifestyle). This would be a way of alleviating some of the inequalities resulting from the genetic lottery. Also, while the discovery that they had short telomeres might indeed have a negative impact on people’s subjective well-being and might lead them to turn to the wrong kind of source when searching for assistance, such information could also have positive effects if people were provided with appropriate advice from scientists and medical professionals. It could strenghten public support for serious research into life extension, and incite those at risk to adopt a healthier lifestyle.

The growing availability of genetic information does raise important ethical concerns, but such information can also be used so as to promote health, well-being, and even fairness and equality. It is up to us to try and ensure that the latter happens.

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2 Responses to Should we be able to know how long we have to live?

  • Dmitri Pisartchik says:

    Thank you for an interesting article, Alexandre.

    I have to say that the title of your post suggested a slightly different track from the one you took in the body itself. My first impression was that the discussion was going to centre around the ethics of knowing your biological age. To put into normative terms – what is the moral status of knowing ones' true (biological) age – forbidden, permissible or required? In other words, ought we be denied this knowledge (Book of Genesis flash-backs anyone?), ought it be up to the individual to know how (biologically) old they are, or should this knowledge be mandated, for lack of a better term, on the individual? Perhaps, that's just me wishing for greater precision, since you do allude to this set of questions in a less direct way. (Briefly, I doubt that any coherent and persuasive argument can be made for either of the extreme positions (forbidden or required) and the middle ground seems to be left as the winner by default as a result.)

    I do have to say that I did not find your position (that this knowledge is a good thing) to be very convincing. You say that there are several reasons for us to welcome this development, but only mention one – that this knowledge will allow us to (more effectively) to plan our lives and tailor our lifestyles. My question, however, would be: why is this a good thing, exactly?

    Firstly, it seems to me that outside of such circumstances as war, extreme poverty, or severe medical problems and the like, we are (in the West at any rate) already in a position to plan our lives and tune our lifestyles to significant degrees. Outside of accidents or infections, most people can plan well ahead into retirement age and currently available health information seems sufficient to make positive lifestyle changes as well. So the question is, then, why is the prospective knowledge of your future years that we currently have (that is, without this new or similar test) inadequate? The (rather dubious, I think) knowledge-as-good-in-itself position notwithstanding, I don't immediately see why knowing more about when I will die is a good thing as compared to what I already do know on this point.

    A second point is that there is (or seems to me) a negative side beyond the concerns over third parties (insurance companies) to the knower himself. The argument, such as it is, points out that a certain degree of uncertainty, chance, and consequently mystery is an integral part of a fulfilling human experience. Indeed, that there might just be such a thing as "knowing too much for your own good." On the one hand, its not at all clear just how useful this telomere information will be for your planning, similar to the point raised above, since this information may well coincide with your plans as they are already (that is, it may well be that your biological life expectancy will be within reasonable range of the average life expectancy of your region). Thus, this additional knowledge may be nothing more than extra epistemic baggage that you have to worry about. Moreover, let us assume that this test does provide accurate enough information about your biological age and consequently predicts when your body will die. Given the multitude of factors that determine your actual life expectancy that are in no way related to the length of your telomeres, is there any reason to think that this new knowledge will make any significant difference in the way you should rationally plan your life? I find this doubtful. For suppose that my test will tell me that my body will expire at age 80 and I am now 25. What possible plans can I construct or lifestyle changes can I make given those two pieces of information? Practically, none whatsoever.

    More disturbingly, there is also a possibility that this information may well lead people to fatalism and damage their psychological wellbeing provoking a kind of "death row" mentality. Of course, if I am right in my remarks above, they will be wrong to take a fatalistic view based on that piece of information alone (since they could die next week in a car accident) but there is still a sense of fatalism that can be ascribed to knowing when ones body will expire. This would even be a concern if we concede the truth of hard determinism since determinism all on its own makes no claims to our knowledge of the future (or even our ability to every know the future at all) and thus leaves room for the experience of wonder, surprise and anxiety. This latter feeling, although quite detrimental when pathological, I think is among the the necessary elements of what it is to experience life as a human being in fullest extent possible, even when its anxiety over one's own death. It is human to be anxious (to a moderate degree) and to not know certain things. Perhaps knowledge of the time of one's death is among those things we are better off not knowing.

    Regards,
    Dmitri

  • Alexandre Erler says:

    Dmitri: thank you for your comment. I agree that we already have quite a lot of information that can allow us to plan ahead and make changes to our lifestyle if we wish to live longer. Yet this new test gives us even more precise information about our life expectancy, because it's tailored to the individual. True, sometimes it might just confirm what the person was already assuming; still, in that case I don't see that it does any harm. On the other hand, in cases (which I take it are quite common) where the person is in fact over-optimistic about his own life expectancy and health prospects, I think the test can make the relevant information more vivid for him, thus making him more likely to take appropriate action. Of course, we already know e.g. that smoking and binge drinking are bad for your health, but it's easier for people to live in denial about these things as long as they don't experience any serious symptoms – they might for instance think of a relative who kept smoking throughout his life and still lived into his eighties. But once you are faced with the clear-cut observation that you have short telomeres, denial becomes more difficult.

    The question of what impact taking such a test would typically have on people's attitudes and psychological well-being is indeed a crucial one, and we need to collect more empirical data on this matter. If such information led people to become fatalistic that would clearly be a bad thing. My suggestion was that, ideally, it could on the contrary serve as a wake-up call by forcing people to confront the fact of their own mortality earlier than they naturally tend to do, possibly leading to greater public support for the development of life extension technologies – which I think is very much needed.

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