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Bioethics. Группа авторов
Читать онлайн.Название Bioethics
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isbn 9781119635154
Автор произведения Группа авторов
Жанр Медицина
Издательство John Wiley & Sons Limited
Parental eugenics occurs every time people select mates or sperm or egg donors. Most people do not find this kind of eugenics to be as troubling as the state‐sponsored eugenics programs envisioned by Aldous Huxley or implemented by Nazi Germany. Indeed, one might argue that this kind of eugenics is a morally acceptable exercise of parental rights.71 Moreover, most parents do not make their reproductive choices with the sole aim of controlling the human gene pool; any effects these choices have on the gene pool are unintended consequences of parental actions. As long as we accept the idea that parents should be allowed to make some choices that affect the composition of the human gene pool, then parental eugenics is not inherently wrong.
But what about state‐sponsored eugenics? One might argue that state‐sponsored eugenics programs, such as involuntary sterilization of the mentally disabled or mandatory genetic screening, are morally wrong because they:
1 constitute unjustifiable violations of individual liberty and privacy;
2 are a form of genetic discrimination;
3 can have adverse evolutionary consequences by reducing genetic diversity; and
4 can lead us down a slippery slope toward increased racial and ethnic hatred, bias, and genocide.
Although these arguments do not prove that all forms of state‐sponsored eugenics are morally wrong, they place a strong burden of proof on those who defend these programs. It is not my aim to explore state‐sponsored eugenics in depth here.72 However, even if we assume that state‐sponsored eugenics is inherently wrong, this still only proves that some forms of GLGE or GLGT are inherently wrong. There is nothing inherently wrong with parental choices to use GLGE or GLGT to help children achieve health, freedom, and other values. Thus arguments that appeal to our concerns about eugenics do not prove that genetic enhancement is inherently wrong. Some forms of genetic enhancement, e.g., state‐sponsored eugenics, are wrong, others are not.
Conclusion: The Significance of the Distinction
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.
Notes
1 1 Juengst 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 7 McGee G. The Perfect Baby. Lanham, MD: Rowman and Littlefield, 1997.
8 8 Vogel G. Genetic enhancement: from science fiction to ethics quandary. Science 1997; 277: 1753–4.
9 9 See note 4, Anderson 1985.
10 10 Fowler G, Juengst E, and Zimmerman B. Germ‐line gene therapy and the clinical ethos of medical genetics. Theoretical Medicine 1989; 19: 151–7.
11 11 See note 3, Berger and Gert 1991.
12 12 Zimmerman B. Human germ‐line gene therapy: the case for its development and use. Journal of Medicine and Philosophy 1991; 16: 593–612.