Noninstrumental Responses

Noninstrumental responses to knowing information about the likely end of one's life are far harder to understand. These are situations in which knowing information is significant, though not because it is to be put to any practical use. Where the information is information about one's own genetic makeup and so information about the likely cause and timing of one's death—this may contribute, in some intangible way, to one's sense of self, of who one is, what sort of person one is, what one's life is like. Self-knowledge is often painful, and this form of self-knowledge may be so as well. But it may also contribute to what we think of as the quintessential way of being human in the world. It is far harder to talk about the value of being able to comprehend and reflect about one's own circumstances as a human being, and there is even disagreement about whether it is a value or a disvalue (though the maxim "better Socrates dissatisfied than a pig satisfied" still rings in our ears), but it is the really important issue here. Advances in genetic science will presumably also make it possible for us to perform the same sort of prognostication about the length of life for individual animals and plants of various species, but animals and plants cannot comprehend this information and do not, we assume, have a sense of self, something usually held to be possible only for humans. For humans, the possibilities of genetic prognostication, I think, will bring something new to the sense of self an individual has, something we now have only in the most inchoate ways: the sense of myself as a person with a certain size of life, whether short or long.

How will knowing oneself as a person with a probably short lifespan, or a probably long lifespan, change us? Will knowing this from childhood on be more or less like knowing—something which will also become possible—whether one will be tall or short, something which, for the most part, an individual eventually must just accept? After all, the capacity to know in advance is likely to precede the capacity to do anything about changing it. Do we adapt better to the circumstances of our lives if we know what they are going to be?

The barest evidence from studies of responses of people taking diagnostic tests for Huntington's disease invites us to conjecture that knowing one's genetic makeup and hence knowing in advance the probable timing and cause of one's death will lead to a decrease in anxiety and stress. Of subjects measured before and after undergoing diagnostic analysis, those who received good news (negative for the Huntington's mutation) and those who received bad news (positive for the mutation) both experienced decreases in anxiety and stress; subjects whose results were inconclusive remained at higher anxiety and stress levels (Wiggins, 1992). There are reasons not to draw too heavily on this study: for one thing, it was flawed by the design of the control group, which included some subjects who were not tested at all, and, for another, it examined people who got news comparatively suddenly, after a test, about a matter they had been in the dark about for their whole lives. And in any case, it is a big leap from this one small study of one disease condition to a generalization about what it would be like for human beings to be routinely aware of their own genetic makeup and of the approximate size of their lives. Yet it is a tempting leap anyway: we may speculate, at least, that human beings would experience less anxiety about death, less open-ended, free-floating Angst. At the same time we can predict that that knowledge will be painful for some, namely those expecting short lives. And anxiety may increase for all individuals as the age-range in which they can expect the onset of the disease or condition that is likely to kill them approaches. And, of course, there can be no guarantees; the prognostications that genetic science increasingly makes possible do not ensure that some accident, violence, or unrelated disease will not interrupt life earlier, or that there will not be mistakes in prognostication. But it may well undercut our tendency to avoid issues of death altogether, to refuse to prepare for it in any but the most superficial ways, and to treat death as an existential unknown, when in fact it is becoming something that can be increasingly foreseen.

It is impossible to deny that we are already involved in a process of profound change, from the human past—say, the 16th century—in which a person could have very little realistic idea of when or how he or she would die, through the present, in which more of us have some rudimentary, inchoate idea of our own fates, into a future in which it will be possible to prognosticate increasingly accurately about the cause and timing of each individual's death. Of course, we cannot now say with certainty how accurate or complete our capacities for genetically-based prognostication will eventually be. But we can already begin to ask the ethically important questions: will this be a bad thing—yet another feature of same brave new world, the GATTACA dystopia, in which privacies are invaded and human meaning undermined, or will it be a good thing, yet another product of advances in science which improve and enhance the human condition? I myself see it as closer to the latter, but then I am someone who would choose to know now, if I could, the date and cause of my own death. Yet many—maybe most—readers of this paper will have answered the test question above the other way; this suggests they will see the answer to the issue here the other way around too. But whether one would want to know or not, whether one sees this change as good or bad, we cannot deny that it is a change that is coming in the human future, and that, compared to the human past, we are already partway along in a huge change, but one for which it is difficult for us to see that it is already well underway.

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