Читать книгу Bioethics - Группа авторов - Страница 59

The first task in treating the problem from the child’s point of view is to find a way of referring to possible future offspring without seeming to confer some sort of morally significant existence on them. I follow the convention of calling children who might be born in the future but who are not now conceived “possible” children, offspring, individuals, or persons.

Now, what claims about children or possible children are relevant to the morality of child‐bearing in the circumstances being considered? Of primary importance is the judgment that we ought to try to provide every child with something like a minimally satisfying life. I am not altogether sure how best to formulate this standard, but I want clearly to reject the view that it is morally permissible to conceive individuals so long as we do not expect them to be so miserable that they wish they were dead.¹⁵ I believe that this kind of moral minimalism is thoroughly unsatisfactory and that not many people would really want to live in a world where it was the prevailing standard. Its lure is that it puts few demands on us, but its price is the scant attention it pays to human well‐being.

How might the judgment that we have a duty to try to provide a minimally satisfying life for our children be justified? It could, I think, be derived fairly straightforwardly from either utilitarian or contractarian theories of justice, although there is no space here for discussion of the details. The net result of such analysis would be to conclude that neglecting this duty would create unnecessary unhappiness or unfair disadvantage for some persons.

Of course, this line of reasoning confronts us with the need to spell out what is meant by “minimally satisfying” and what a standard based on this concept would require of us. Conceptions of a minimally satisfying life vary tremendously among societies and also within them. De rigueur in some circles are private music lessons and trips to Europe, whereas in others providing eight years of schooling is a major accomplishment. But there is no need to consider this complication at length here because we are concerned only with health as a prerequisite for a minimally satisfying life. Thus, as we draw out what such a standard might require of us, it seems reasonable to retreat to the more limited claim that parents should try to ensure something like normal health for their children. It might be thought that even this moderate claim is unsatisfactory as in some places debilitating conditions are the norm, but one could circumvent this objection by saying that parents ought to try to provide for their children health normal for that culture, even though it may be inadequate if measured by some outside standard.¹⁶ This conservative position would still justify efforts to avoid the birth of children at risk for Huntington’s Disease and other serious genetic diseases in virtually all societies.¹⁷

This view is reinforced by the following considerations. Given that possible children do not presently exist as actual individuals, they do not have a right to be brought into existence, and hence no one is maltreated by measures to avoid the conception of a possible person. Therefore, the conservative course that avoids the conception of those who would not be expected to enjoy a minimally satisfying life is at present the only fair course of action. The alternative is a laissez‐faire approach that brings into existence the lucky, but only at the expense of the unlucky. Notice that attempting to avoid the creation of the unlucky does not necessarily lead to fewer people being brought into being; the question boils down to taking steps to bring those with better prospects into existence, instead of those with worse ones.

I have so far argued that if people with Huntington’s Disease are unlikely to live minimally satisfying lives, then those who might pass it on should not have genetically related children. This is consonant with the principle that the greater the danger of serious problems, the stronger the duty to avoid them. But this principle is in conflict with what people think of as the right to reproduce. How might one decide which should take precedence?

Expecting people to forgo having genetically related children might seem to demand too great a sacrifice of them. But before reaching that conclusion we need to ask what is really at stake. One reason for wanting children is to experience family life, including love, companionship, watching kids grow, sharing their pains and triumphs, and helping to form members of the next generation. Other reasons emphasize the validation of parents as individuals within a continuous family line, children as a source of immortality, or perhaps even the gratification of producing partial replicas of oneself. Children may also be desired in an effort to prove that one is an adult, to try to cement a marriage, or to benefit parents economically.

Are there alternative ways of satisfying these desires? Adoption or new reproductive technologies can fulfill many of them without passing on known genetic defects. Sperm replacement has been available for many years via artificial insemination by donor. More recently, egg donation, sometimes in combination with contract pregnancy,¹⁸ has been used to provide eggs for women who prefer not to use their own. Eventually it may be possible to clone individual humans, although that now seems a long way off. All of these approaches to avoiding the use of particular genetic material are controversial and have generated much debate. I believe that tenable moral versions of each do exist.¹⁹

None of these methods permits people to extend both genetic lines or realize the desire for immortality or for children who resemble both parents; nor is it clear that such alternatives will necessarily succeed in proving that one is an adult, cementing a marriage, or providing economic benefits. Yet, many people feel these desires strongly. Now, I am sympathetic to William James’s dictum regarding desires: “Take any demand, however slight, which any creature, however weak, may make. Ought it not, for its own sole sake be satisfied? If not, prove why not.”²⁰ Thus a world where more desires are satisfied is generally better than one where fewer are. However, not all desires can be legitimately satisfied, because as James suggests, there may be good reasons, such as the conflict of duty and desire, why some should be overruled.

Fortunately, further scrutiny of the situation reveals that there are good reasons why people should attempt with appropriate social support to talk themselves out of the desires in question or to consider novel ways of fulfilling them. Wanting to see the genetic line continued is not particularly rational when it brings a sinister legacy of illness and death. The desire for immortality cannot really be satisfied anyway, and people need to face the fact that what really matters is how they behave in their own lifetimes. And finally, the desire for children who physically resemble one is understandable, but basically narcissistic, and its fulfillment cannot be guaranteed even by normal reproduction. There are other ways of proving one is an adult, and other ways of cementing marriages – and children don’t necessarily do either. Children, especially prematurely ill children, may not provide the expected economic benefits anyway. Nongenetically related children may also provide benefits similar to those that would have been provided by genetically related ones, and expected economic benefit is, in many cases, a morally questionable reason for having children.

Before the advent of reliable genetic testing, the options of people in Huntington’s families were cruelly limited. On the one hand, they could have children, but at the risk of eventual crippling illness and death for them. On the other, they could refrain from child‐bearing, sparing their possible children from significant risk of inheriting this disease, perhaps frustrating intense desires to procreate – only to discover, in some cases, that their sacrifice was unnecessary because they did not develop the disease. Or they could attempt to adopt or try new reproductive approaches.

Reliable genetic testing has opened up new possibilities. Those at risk who wish to have children can get tested. If they test positive, they know their possible children are at risk. Those who are opposed to abortion must be especially careful to avoid conception if they are to behave responsibly. Those not opposed to abortion can responsibly conceive children, but only if they are willing to test each fetus and abort those who carry the gene. If individuals at risk test negative, they are home free.

What about those who cannot face the test for themselves? They can do prenatal testing and abort fetuses who carry the defective gene. A clearly positive test also implies that the parent is affected, although negative tests do not rule out that possibility. Prenatal testing can thus bring knowledge that enables one to avoid passing the disease to others, but only, in some cases, at the cost of coming to know with certainty that one will indeed develop the disease. This situation raises with peculiar force the question of whether parental responsibility requires people to get tested.

Some people think that we should recognize a right “not to know.” It seems to me that such a right could be defended only where ignorance does not put others at serious risk. So if people are prepared to forgo genetically related children, they need not get tested. But if they want genetically related children, then they must do whatever is necessary to ensure that affected babies are not the result. There is, after all, something inconsistent about the claim that one has a right to be shielded from the truth, even if the price is to risk inflicting on one’s children the same dread disease one cannot even face in oneself.

In sum, until we can be assured that Huntington’s Disease does not prevent people from living a minimally satisfying life, individuals at risk for the disease have a moral duty to try not to bring affected babies into this world. There are now enough options available so that this duty needn’t frustrate their reasonable desires. Society has a corresponding duty to facilitate moral behavior on the part of individuals. Such support ranges from the narrow and concrete (such as making sure that medical testing and counseling is available to all) to the more general social environment that guarantees that all pregnancies are voluntary, that pronatalism is eradicated, and that women are treated with respect regardless of the reproductive options they choose.