Bioethics

Two decades ago, James Rachels challenged the moral significance of the active–passive euthanasia distinction in a widely anthologized essay. 73 This paper has attempted to perform a similar debunking of the therapy–enhancement distinction in human genetics. It has considered and rejected a variety of different ways of arguing that the therapy–enhancement distinction in human genetics marks a solid, moral boundary. Genetic enhancement is not inherently immoral nor is genetic therapy inherently moral. Some forms of enhancement are immoral, others are not; likewise, some types of therapy are immoral, others are not. The implication of this view is that we should not use the therapy–enhancement distinction as our moral compass in human genetics. In evaluating the ethical aspects of any particular genetic intervention, we should ask not whether it is therapy or enhancement but whether the intervention poses significant risks, offers significant benefits, violates or promotes human dignity, is just or unjust, and so on.

Having said this much, I think some forms of enhancement can be morally justified, provided that they can be shown to be safe and effective. For example, using genetic technology to protect people against diseases could be justified on the grounds that it benefits patients. I think one can even justify the use of genetics for cosmetic purposes in terms of benefits to patients. We can also view some forms of genetic therapy as unacceptable (at present) because they pose unjustifiable risks to patients or future generations. For example, all forms of GLGT and some types of SGT, such as a procedure for fighting cancer at the genetic level, are too risky, given our current scientific and technical limitations. In any case, the moral assessment of these procedures depends on considerations of probable benefits and harms (as well as other moral qualities), not on their classification as “therapy” or “enhancement.”

So what is the significance of the therapy–enhancement distinction? What role should it play in thinking about the ethics of human genetics? Can it guide public policy? The most I can say in favor of the distinction is that it defines moral zones without any sharp boundaries. The significance of the distinction may lie in its ability to address our fears and hopes: we hope that genetic therapy will help us treat diseases and improve human health, but we fear that genetic enhancement will lead us down a slippery slope toward a variety of undesirable consequences, such as discrimination, bias, eugenics, injustice, biomedical harms, and so on. 74 Genetic enhancement will probably always dwell in the shadow of the slippery slope argument, while genetic therapy will probably always bask in the glory of modern medicine. Our hopes and fears may or may not be warranted; only time will tell. In the meantime, even if the therapy–enhancement distinction does not draw any solid moral boundaries, we need to be aware of the distinction in public dialogues about genetics. In these dialogues, it may be useful to address the fears of enhancement and the hopes of therapy while attempting to grapple with the realities of the genetic revolution.

1 1Juengst E. Can enhancement be distinguished from prevention in genetic medicine? Journal of Medicine and Philosophy 1997; 22: 125–42.

2 2 Holtug N. Altering humans – the case for and against human gene therapy. Cambridge Quarterly of Healthcare Ethics 1997; 6: 157–74.

3 3 Berger E., and Gert B. Genetic disorders and the ethical status of germ‐line gene therapy. Journal of Medicine and Philosophy 1991; 16: 667–83.

4 4 Anderson W. Human gene therapy: scientific and ethical considerations. Journal of Medicine and Philosophy 1985; 10: 275–91.

5 5 Anderson W. Human gene therapy: why draw a line? Journal of Medicine and Philosophy 1989; 14: 81–93.

6 6 Anderson W. Genetics and human malleability. Hastings Center Report 1990; 20(1): 21–4.

7 7McGee G. The Perfect Baby. Lanham, MD: Rowman and Littlefield, 1997.

8 8Vogel G. Genetic enhancement: from science fiction to ethics quandary. Science 1997; 277: 1753–4.

9 9See note 4, Anderson 1985.

10 10Fowler G, Juengst E, and Zimmerman B. Germ‐line gene therapy and the clinical ethos of medical genetics. Theoretical Medicine 1989; 19: 151–7.

11 11See note 3, Berger and Gert 1991.

12 12Zimmerman B. Human germ‐line gene therapy: the case for its development and use. Journal of Medicine and Philosophy 1991; 16: 593–612.

13 13Glover J. What Sort of People Should There Be? New York: Penguin Books, 1984.

14 14See note 7, McGee 1997.

15 15 Resnik D. Debunking the slippery slope argument against human germ line gene therapy. Journal of Medicine and Philosophy 1993; 19: 23–40.

16 16Resnik D. Genetic engineering and social justice: a Rawlsian approach. Social Theory and Practice 1997; 23(3): 427–48.

17 17See note 3, Berger and Gert 1991.

18 18See note 4, Anderson 1985.

19 19See note 6, Anderson 1990.

20 20 Rifkin J. Algeny. New York: Viking Press, 1983.

21 21Ramsey P. Fabricated Man: The Ethics of Genetic Control. New Haven: Yale University Press, 1970.

22 22It is not my aim in this essay to argue that there is no distinction between therapy and enhancement; I am only attempting to question the moral significance of the distinction. If it turns out that there is not a tenable distinction between therapy and enhancement, so much the worse for the moral significance of this distinction. For the purpose of this essay I will define “enhancement” as a medical intervention that has goals other than therapeutic ones. There may be many types of enhancement on this view. Some forms of enhancement, such as a circumcision, can have therapeutic aims as well, e.g., preventing urinary tract infections. Some forms of therapy, such as heart transplantation, could have enhancement effects, e.g., a person could acquire an above average heart. Some interventions, such as preventative medicine, could straddle the line between enhancement and therapy. For further discussion, see note 1, Juengst 1997.

23 23See note 4, Anderson 1985.

24 24Suzuki D and Knudtson P. Genethics. Cambridge, Mass: Harvard University Press, 1989.

25 25Resnik D, Langer P, and Steinkraus H. Human Germ‐line Gene Therapy: Scientific, Ethical, and Political Issues. Austin, Texas: RG Landes, 1999.

26 26See note 24, Suzuki and Knudtson 1989.

27 27See note 5, Anderson 1989.

28 28 See note 6, Anderson 1990.

29 29Baird P. Altering human genes: social, ethical, and legal implications. Perspectives in Biology and Medicine 1994; 37: 566–75.

30 30In the current debate in bioethics, several writers have attempted to use the concepts of health and disease to distinguish between genetic therapy and genetic enhancement.

31 31 See note 1, Juengst 1997.

32 32 See note 3, Berger and Gert 1991.

33 33See note 5, Anderson 1989.

34 34See note 6, Anderson 1990: 24.

35 35Caplan A. The concepts of health, illness, and disease. In: Veatch R, ed. Medical Ethics, 2nd ed. Sudbury, Mass: Jones and Bartlett, 1997: 57–74.

36 36Khushf G. Expanding the horizon of reflection on health and disease. Journal of Medicine and Philosophy 1995; 1–4.

37 37Some writers distinguish between relativist and nonrelativist accounts; some others distinguish between biological and social accounts. But the basic insight is the same: the concepts of health and disease are normative or descriptive.

38 38Boorse C. Health as a theoretical concept. Philosophy of Science 1977; 44: 542–73.

39 39Daniels N. Just Health Care. Cambridge: Cambridge University Press, 1985.

40 40Sigerist H. Civilization and Disease. Chicago: University of Chicago Press, 1943.