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Choosing Who Will Be Disabled: Genetic Intervention and the Morality of Inclusion

Published online by Cambridge University Press:  13 January 2009

Allen Buchanan
Allen Buchanan
Affiliation:
Business Ethics, Philosophy, and Medical Ethics, University of Wisconsin, Madison
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Extract

The Nobel prize-winning molecular biologist Walter Gilbert described the mapping and sequencing of the human genome as “the grail of molecular biology.” The implication, endorsed by enthusiasts for the new genetics, is that possessing a comprehensive knowledge of human genetics, like possessing the Holy Grail, will give us miraculous powers to heal the sick, and to reduce human suffering and disabilities. Indeed, the rhetoric invoked to garner public support for the Human Genome Project appears to appeal to the best of the Western tradition's enthusiasm for progress: the idea of improving human lives through the practical application of scientific knowledge.

Type
Research Article
Information
Social Philosophy and Policy , Volume 13 , Issue 2 , Summer 1996 , pp. 18 - 46
Copyright
Copyright © Social Philosophy and Policy Foundation 1996

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References

1 In other words, since all human beings have different genomes (except for identical twins), there is no such thing as the human genome. What the Human Genome Project aims at is sequencing many bits of DNA from many human beings to derive an understanding of what is common to all human beings, absent any errors in replication or mutations. The Human Genome Project was officially begun in 1989, but for several years previous to this there had been discussion, by Nobel prize-winners Walter Gilbert and James Watson, among others, of the idea of sequencing the entire human genome. For an excellent account of the scientific and political origins of the Human Genome Project, see Cook-Deegan, Robert, The Gene Wars: Science, Politics, and the Human Genome (New York: W. W. Norton and Co., 1994).Google Scholar

2 For an excellent and influential history of eugenics in the United States, see Kevles, Daniel J., In the Name of Eugenics: Genetics and the Uses of Human Heredity (New York: Alfred A. Knopf, 1985).Google Scholar

3 For what may be the most detailed and systematic statement of the radical disabilities rights position, see Just Technology?, an issue paper of the International League of Societies for Persons with Mental Handicap (North York, Ontario: L'Institute Roeher, 1994). It is important to note that there is no single disabilities rights position. Those active in the disabilities rights movement (or movements) have expressed a wide range of responses to the prospects of genetic intervention with human beings. No assumption is made here that what I have labeled the radical disabilities rights view is the dominant one.

4 Ibid., p. 8.

5 Ibid., p. 1.

6 See Buchanan, Allen, “The Morality of Inclusion,” Social Philosophy and Policy, vol. 10, no. 2 (Summer 1993), pp. 233–57.CrossRefGoogle Scholar

7 A large number of objections to various actual or proposed uses of genetic technology have been voiced by those claiming to speak for the disabled and others as well. No attempt is made here to provide an exhaustive catalog of all such objections. However, it can be said that the unifying theme with respect to objections raised by disabilities rights advocates is one of discrimination: that discrimination (against people with disabilities) rests upon and expresses attitudes that devalue individuals with disabilities. More broadly, two general types of concerns about “eugenic abuses” of genetic intervention technology may be distinguished. On the one hand, there are fears of old-style statist eugenics policies, whereby individuals' reproductive freedom and even their lives would be at risk due to policies for “human improvement” that are given the force of law and directed by the state. On the other hand, there are apprehensions about market-driven, “backdoor” eugenics. With respect to the latter, the fear is that even if the state does not enforce eugenic policies, the cumulative effects of many individual choices under conditions in which genetic services are offered as a commodity in the market will lead to morally defective outcomes. Two examples of the dangers of market-driven, backdoor eugenics are frequently mentioned: (1) increasing imbalances in the ratio of males to females in countries such as India and China where detection of the sex of the fetus is undertaken for the purpose of aborting females, and (2) coercive social pressures to abort or avoid the conception of individuals with genetic defects either for economic reasons (if such individuals become uninsurable) or because of societal ideals of human perfection and the stigmatization of those who fall short of these ideals.

8 Kitcher, Philip cites an actual case of this occurring with respect to support for persons with thalassemia anemia in Greece; see his The Lives to Come: The Genetic Revolution and Human Possibility (New York: Simon and Schuster, 1996).Google Scholar

9 Examples of defects which might be treated in this way include one form of Gaucher's disease, Wilson's disease, and various forms of cystic fibrosis. See Kitcher, , The Lives to Come.Google Scholar

10 Buchanan, Allen, “Equal Opportunity and Genetic Intervention,” Social Philosophy and Policy, vol. 12, no. 2 (Summer 1995), pp. 105–35.CrossRefGoogle ScholarPubMed

11 For a more detailed defense of this conception of equal opportunity, for references to its occurrence in recent literature on distributive justice, and for a discussion of how it differs from alternative conceptions of equal opportunity, see ibid., pp. 114–25.

12 This idea that equal concern and respect for persons requires strictly equal opportunities, at least so far as it is feasible to achieve such a condition, is suggested by Rawls, John's discussion of “fair equality of opportunity” in A Theory of Justice (Cambridge: Harvard University Press, 1971), p. 100.Google Scholar

13 Alternately, since some genetic defects (e.g., Huntington's chorea, Lesh-Nyan syndrome, Tay-Sachs disease and sickle-cell anemia) not only grossly limit opportunities but cause severe suffering and premature death, the obligation to prevent harm can also provide a moral mandate for genetic intervention. Even if the obligation to prevent harm is not understood to be an obligation of justice, if the harm is sufficiently serious, it may have great moral weight and in some cases might even justify interventions, as in the case of the prevention of prenatal harms, that are performed without the consent of the woman carrying the fetus. At the very least, it could be argued that in cases where an extremely serious harm could be avoided without violating anyone's rights, the obligation to prevent harm justifies the use of public resources for intervening.

14 Just Technology? pp. 24–25.

15 See Buchanan, Allen and Brock, Dan W., Deciding for Others: The Ethics of Surrogate Decision Making (New York: Cambridge University Press, 1989).Google Scholar

16 Just Technology? pp. 6–7.

17 In the case of a recessive genetic disorder, the disorder only occurs if the individual has two copies of the gene in question, one from each parent. In the case of an autosomal dominant genetic disorder, only one copy is required.

18 This thought experiment was suggested to me by Dan W. Brock.

19 Although this definition of “disability” is my own, it is not wholly novel. I believe it is merely an explicit elaboration of a distinction that is commonly made between a defect and a disability.

20 See Wilder, Daniel, “Paternalism and the Mildly Retarded,” in Paternalism, ed. Sartorius, Rolf E. (Minneapolis: University of Minnesota Press, 1983), pp. 83–94Google Scholar; and Buchanan, Allen, “Justice as Reciprocity versus Subject-Centered Justice,” Philosophy and Public Affairs, vol. 19, no. 3 (Summer 1990), pp. 227–52.Google Scholar

21 Public Law 101–336, Title 1, Section 101 (9) in United States Statutes at Large, vol. 104, Part I.