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): 453.
12 12 To try to separate the issue of the gravity of the disease from the existence of a given individual, compare this situation with how we would assess a parent who neglected to vaccinate an existing child against a hypothetical viral version of Huntington’s.
13 13 The New York Times (September 30, 1975), p. 1. The Joseph family disease is similar to Huntington’s Disease except that symptoms start appearing in the twenties. Rick Donohue was in his early twenties at the time he made this statement.
14 14 I have talked to college students who believe that they will have lived fully and be ready to die at those ages. It is astonishing how one’s perspective changes over time and how ages that one once associated with senility and physical collapse come to seem the prime of human life.
15 15 The view I am rejecting has been forcefully articulated by Derek Parfit, Reasons and Persons (Oxford: Clarendon, 1984). For more discussion, see ch. 2 of Reproducing Persons, “Loving Future People.”
16 16 I have some qualms about this response, because I fear that some human groups are so badly off that it might still be wrong for them to procreate, even if that would mean great changes in their cultures. But
