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.
Notes
1 1 I focus on genetic considerations, although with the advent of AIDS the scope of the general question here could be expanded. There are two reasons for sticking to this relatively narrow formulation. One is that dealing with a smaller chunk of the problem may help us to think more clearly, while realizing that some conclusions may nonetheless be relevant to the larger problem. The other is the peculiar capacity of some genetic problems to affect ever more individuals in the future.
2 2 For example, see Leon Kass, “Implications of Prenatal Diagnosis for the Human Right to Life,” in Ethical Issues in Human Genetics, ed. Bruce Hilton et al. (New York: Plenum, 1973).
3 3 This is, of course, a very broad thesis. I defend an even broader version in ch. 2 of Reproducing Persons, “Loving Future People.”
4 4 Why would we want to resist legal enforcement of every moral conclusion? First, legal action has many costs, costs not necessarily worth paying in particular cases. Second, legal enforcement tends to take the matter out of the realm of debate and treat it as settled. But in many cases, especially where mores or technology are rapidly evolving, we don’t want that to happen. Third, legal enforcement would undermine individual freedom and decision‐making capacity. In some cases, the ends envisioned are important enough to warrant putting up with these disadvantages.
5 5 Those who do not see fetuses as moral persons with a right to life may nonetheless hold that abortion is justifiable in these cases. I argue at some length elsewhere that lesser defects can cause great suffering. Once we are clear that there is nothing discriminatory about failing to conceive particular possible individuals, it makes sense, other things being equal, to avoid the prospect of such pain if we can. Naturally, other things rarely are equal. In the first place, many problems go undiscovered until a baby is born. Second, there are often substantial costs associated with screening programs. Third, although women should be encouraged to consider the moral dimensions of routine pregnancy, we do not want it to be so fraught with tension that it becomes a miserable experience. (See ch. 2 of Reproducing Persons, “Loving Future People.”)
6 6 It should be noted that failing to conceive a single individual can affect many lives: in 1916, 962 cases could be traced from six seventeenth‐century arrivals in America. See Gordon Rattray Taylor, The Biological Time Bomb (New York: Penguin, 1968), p. 176.
7 7 The Merck Manual (Rahway, NJ: Merck, 1972), pp. 1363, 1346. We now know that the age of onset and severity of the disease are related to the number of abnormal replications of the glutamine code on the abnormal gene. See Andrew Revkin, “Hunting Down Huntington’s,” Discover (December 1993): 108.
8 8 Hymie Gordon, “Genetic Counseling,” JAMA, 217, no. 9 (August 30, 1971): 1346.
9 9 See Revkin, “Hunting Down Huntington’s,” 99–108.
10 10 “Gene for Huntington’s Disease Discovered,” Human Genome News, no. 1 (May 1993): 5.
11 11 Charles Smith, Susan Holloway, and Alan E. H. Emery, “Individuals at Risk in Families – Genetic Disease,” Journal of Medical Genetics, 8 (1971):