Bioethics

5 5Those 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 6It 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 7The 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 8Hymie Gordon, “Genetic Counseling,” JAMA, 217, no. 9 (August 30, 1971): 1346.

9 9See Revkin, “Hunting Down Huntington’s,” 99–108.

10 10“Gene for Huntington’s Disease Discovered,” Human Genome News, no. 1 (May 1993): 5.

11 11Charles Smith, Susan Holloway, and Alan E. H. Emery, “Individuals at Risk in Families – Genetic Disease,” Journal of Medical Genetics, 8 (1971): 453.

12 12To 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 13The 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 14I 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 15The 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 16I 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 this is a complicated issue that needs to be investigated on its own.

17 17Again, a troubling exception might be the isolated Venezuelan group Nancy Wexler found, where, because of inbreeding, a large proportion of the population is affected by Huntington’s. See Revkin, “Hunting Down Huntington’s.”

18 18Or surrogacy, as it has been popularly known. I think that “contract pregnancy” is more accurate and more respectful of women. Eggs can be provided either by a woman who also gestates the fetus or by a third party.

19 19The most powerful objections to new reproductive technologies and arrangements concern possible bad consequences for women. However, I do not think that the arguments against them on these grounds have yet shown the dangers to be as great as some believe. So although it is perhaps true that new reproductive technologies and arrangements should not be used lightly, avoiding the conceptions discussed here is well worth the risk. For a series of viewpoints on this issue, including my own “Another Look at Contract Pregnancy” (ch. 12 of Reproducing Persons), see Helen B. Holmes, Issues in Reproductive Technology I: An Anthology (New York: Garland, 1992).

20 20William James, Essays in Pragmatism, ed. A. Castell (New York: Hafner, 1948), p. 73.

The Ethics Committee of the American Society of Reproductive Medicine

In 1994, the Ethics Committee of the American Society of Reproductive Medicine concluded, although not unanimously, that whereas preimplantation sex selection is appropriate to avoid the birth of children with genetic disorders, it is not acceptable when used solely for nonmedical reasons. Since 1994, the further development of less burdensome and invasive medical technologies for sex selection suggests a need to revisit the complex ethical questions involved.

Interest in sex selection has a long history dating to ancient cultures. Methods have varied from special modes and timing of coitus to the practice of infanticide. Only recently have medical technologies made it possible to attempt sex selection of children before their conception or birth. For example, screening for carriers of X‐linked genetic diseases allows potential parents not only to decide whether to have children but also to select the sex of their offspring before pregnancy or before birth.

Among the methods now available for prepregnancy and prebirth sex selection are [1] prefertilization separation of X‐bearing from Y‐bearing spermatozoa (through a technique that is now available although still investigational for humans), with subsequent selection for artificial insemination or for IVF; [2] preimplantation genetic diagnosis (PGD), followed by the sex selection of embryos for transfer; and [3] prenatal genetic diagnosis, followed by sex‐selective abortion. The primary focus of this document is on the second method, sex selection through PGD, although the issues particular to this method overlap with the issues relevant to the others. Preimplantation genetic diagnosis is used with assisted reproductive technologies such as IVF to identify genetic disorders, but it also can provide information regarding the sex of embryos either as a by‐product of testing for genetic disorders or when it is done purely for sex selection ( Table 9.1).

As the methods of sex selection have varied throughout history, so have the motivations for it. Among the most prominent of motivations historically have been simple desires to bear and raise children of the culturally preferred gender, to ensure the economic usefulness of offspring within a family, to achieve gender balance among children in a given family, and to determine a gendered birth order. New technologies also have served these aims, but they have raised to prominence the goal of avoiding the birth of children with sex‐related genetic disorders.

Table 9.1 Embryo sex identification by preimplantation genetic diagnosis for nonmedical reasons

Whatever its methods or its reasons, sex selection has encountered significant ethical objections throughout its history. Religious traditions and societies in general have responded with concerns varying from moral outrage at infanticide to moral reservations regarding the use of some prebirth methods of diagnosis for the sole purpose of sex selection. More recently, concerns have focused on the dangers of gender discrimination and the perpetuation of gender oppression in contemporary societies.