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A Human Germline Modification Scale

Published online by Cambridge University Press:  01 January 2021

Harry Adams
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With progress in genetic research advancing as it is, a host of novel theoretical and practical challenges are thereby being raised. From a bioethical perspective, it is easy to get the feeling that, because of this rapid progress, many fundamental concepts that should be in place arent yet in place. This lack may be felt especially in relation to human gene modification. with the Human Genome Projects (HUGOS) potential to yield innumerable applications, one of the things that should be in place is a set of fundamental conceptual guidelines demarcating the kinds of genetic modifications (I will use this term to stand both for various kinds of genetic therapies and enhancements) that should count as ethically acceptable and legally permissible. In this paper, my goal is to articulate such guidelines, specifically for the set of all possible human germline (rather than somatic) modifications.

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Article
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Journal of Law, Medicine & Ethics , Volume 32 , Issue 1 , Spring 2004 , pp. 164 - 173
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Copyright © American Society of Law, Medicine and Ethics 2004

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References

European Medical Research Councils, Gene Therapy in Man [1988], in Brody, B. A., The Ethics of Biomedical Research: An International Perspective (New York: Oxford, 1998): at 261. Also, for background discussion of these germline issues, see Burgess, J.A. Walsh, A. J., “Is Genetic Engineering Wrong, ‘Per Se’?” Journal of Value Inquiry 32, no. 3 (1998): 393–406; Burley, J., ed., The Genetic Revolution and Human Rights: The Oxford Amnesty Lectures 1998 (New York: Oxford, 1999);Doherty, P. Sutton, A., ed., Man-Made Man: Ethical and Legal Issues in Genetics (Dublin, Ireland: Open Air Publishing, 1997); Drlica, K. A., Double-Edged Sword: The Promises and Risks of the Genetic Revolution (Reading, Ma.: Addison-Wesley Publishing Co., 1994);Frossard, P., The Lottery of Life: The New Genetics and the Future of Mankind (New York: Bantam Press, 1991);Gardner, W., “Can Human Genetic Enhancement Be Prohibited?” The Journal of Medicine and Philosophy 20, no. 1 (1995): 65–84;Glover, J., What Sort of People Should There Be? (New York:Penguin Books, 1988);Hubbard, R. Wald, E., Exploding the Gene Myth (Boston, Ma.: Beacon Press, 1993);Kitcher, P., The Lives to Come: The Genetic Revolution and Human Possibilities (New York, Simon & Schuster, 1997);Lucassen, E., “The Ethics of Genetic Engineering,” Journal of Applied Philosophy 13, no. 1 (1996): 1996–51;Mehlman, M.J. Botkin, J. R., Access to the Genome: The Challenge to Equality (Washington, D.C.: Georgetown University Press, 1998) and Reiss, M.J., “What Sort of People Do We Want? The Ethics of Changing People Through Genetic Engineering,” Notre Dame Journal of Law, Ethics, and Public Policy 13, no. 1 (1999): 63–92.Google Scholar
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E.g., it has been argued that GLM is immoral because it is “unnatural,” being fundamentally opposed to nature’s processes and the (inscrutably wise, as is often the assumption) “natural course of things.” But as SirMedawar, Peter Engelhardt, H. T. Jr. Walters, L., and others have argued, it is quite often the case that “nature does not know best”“genetic evolution is a story of waste, makeshift, compromise, and blunder” (Walters, L. Palmer, J. G., The Ethics of Human Gene Therapy, [N.Y.: Oxford U. Press, 1997]: at 116Engelhardt, H. T. Jr., “Human Nature Technologically Revisited,” Social Philosophy and Policy [1990]: 180–91, at 185.) If we fight and resist and alter Nature in other ways with traditional medically effective techniques, when it chooses to visit needless suffering, disease and waste upon us, then why should resistance via these germline techniques be seen as so inherently immoral or off-limits, when the purpose and effect of these GLMs is just the same as traditional techniques?.Similarly, it has been objected that GLM is immoral because it involves our “playing God,” our engaging in Promethean activities (such as creating, or at least tinkering with, life to come) that should be left only to divine agency. But might it not be argued, with equal force, that God has given us our intellectual and technical capacities to try to help others in whatever way we can, and that, from a medical point of view, it would actually mark irresponsible stewardship of God’s gifts notto develop our medical capacities to the utmost toward these helping ends, viz., ends of preventing untimely death, relieving suffering, and contributing to greater overall health? (Some of these theological objections might have more bite against the practice of cloning than against that of genetic therapy/engineering. For theological discussions of these issues, see Peters, T., Playing God? - Genetic Determinism and Human Freedom [New York: Routledge, 1997];and Peters, , ed., Genetics: Issues of Social Justice [Cleveland, Ohio: The Pilgrim Press, 1998].).Finally, GLM has been objected to for at least three other salient reasons: First, because it comprises a form of experimentation that does not allow future persons and generations to give their consent; Second, because it violates a right to inherit a genetic endowment that has not been intention-ally modified (the so-called “right to the integrity of genetic patrimony”); and third, because it would lead down a slippery slope of increasingly discriminatory eugenics practices. In response to such respective objections, Brody points out “Those who support…germ line therapy would argue [first,] that progenitors can consent to therapeutic experimentation that indirectly affects their descendents much as parents can consent to therapeutic experimentation on their children, [second,] that there is no right to inherit a genetic endowment that produces serious diseases, and [third,] that germ line therapy is no more necessarily connected to inappropriate eugenics than is somatic cell therapy. These responses seem adequate, and all that seems to be justified is a cautionary approach to germ line therapy (Brody, supra note 1, at 87).” For a more thorough coverage of these slippery slope worries see Buchanan, A. Brock, D. W. Daniels, N. Wilder, D., From Chance to Choice: Genetics and Justice (New York: Cambridge: 2000): at 27–60.Google Scholar
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The example comes to mind here of germline treatment for increased stature. For dwarfs, especially those who have been genetically screened and shown to carry genes for dwarfed descendents, such treatment might be considered both therapeutic and fully morally justified. But for an average-sized couple who merely want to have seven-foot-tall basketball player sons for children, this same treatment might be considered both enhancing and morally unjustified. Debates and demands surrounding these traits have already arisen in relation to the (im/proper?) use of somatic therapy and HGH (human growth hormone).Google Scholar
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For an elaboration of this argument and of the limitations, but also the enduring helpfulness, of the treatment-enhancement distinction,see Buchanan, Brock, Daniels, Wilder, , supra note 9, at 110–151.Google Scholar
One possible category I have left out is a ‘2b’ (that would fall between 2 and 3) - GLMs that should be available to some in need, and distributed on the basis of some kind of priority or justice system. I briefly discuss this possibility, which raises more involved questions about the just distribution of healthcare, at the end of Category 2.Google Scholar
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Preferably, these would be families who had voiced strong requests for GLM; these requests might exempt them from the status of being considered as “research guinea pigs.” This bears comparison with some research done on AIDS patients: In these cases, the research was allowed on a limited number of patients who had consented to (or strongly requested) the experimental treatment, and whose other normal options (certain death and suffering) were no better than what the new therapy, even if ineffective, offered. Where exactly the line should be drawn between an acceptable and unacceptable risk/benefit ratio is, in many ways, the central and thorniest question in contemporary bioethics. For one of the best discussions (albeit in the context of animal research) of the complex factors involved in any such risk/benefit assessment,See Smith, J. Boyd, K., Lives in the Balance (New York.: Oxford, 1991). A commensurate twin-horned dilemma presents itself here: If a consensus about these terms and levels of acceptable risk had to come from the whole populace (which the moral logic of democracy seems to require) and this populace erroneously judged that a GLM was too risky, then that GLM—which the scientific community would hypothetically know to be adequately safe—would unfortunately not be available to people in need of it. On the other hand, if the consensus had to come only from the scientific community, then this would raise the (less noxious?) danger of a technical elite pushing its agenda on citizens, without their real consent.Google Scholar
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Such dangerous genetic modifications might not represent a real or widespread threat until much of our global population will have been genetically modified. Even short of this point, however, we might imagine a single nation that, because of imprudent genetic policies, greatly compromises the viability of its gene pool. Would such a nation (N1) then have a right to demand that any other nation (N2) save it, by contributing its (N2s) own restorative genetic variations?.Google Scholar
This is why somatic therapies have met with less resistance than germline therapies: Because somatic therapies usually represent risks of harm only to the individual receiving them, whereas germline therapies represent risks of harm to the original patient and all of his/her subsequent progeny. Subsequently, I will assume that familiar principles such as Beauchamp and Childress’ principle of respect for patient autonomy, and John Stuart Mill’s Harm Principle—loosely, that the state is justified in exercising coercive power to prevent an individual from harming others, but not necessarily from harming only herself—are valid and relevant here. For discussion of these more familiar principles involving harm to only the patient herself, see Beauchamp, T. L. Childress, J. F., Principles of Biomedical Ethics, 4th Ed., (New York: Oxford, 1994); and Feinberg, J., Harm to Self—The Moral Limits of the Criminal Law, Volume 3 (New York: Oxford, 1986);and for elaborations of the Harm Principle, which is more relevant to cases involving harm to persons other than the initial patient, or founder, see Mill, J. S., Three Essays-On Liberty, Representative Government, and The Subjection of Women (New York: Oxford, 1987): at 15, 69.Google Scholar
Suffice it to say that this issue of harms to future or potential offspring requires more space for thorough resolution that I can give it here. For a more detailed analysis, see Parfit, D., Reasons and Persons(Oxford, U.K.: Oxford, 1984): at Ch. 16Resnick, D. B. Steinkraus, H. B. Langer, P. J., Human Germline Gene Therapy: Scientific, Moral and Political Issues (Austin, Tx.: R.G. Landes Co., 1999): at 1999–117Buchanan, Brock, Daniels, Wikler, , supra note 9, at 222–257;Hanser, M., “Harming Future People,” Philosophy and Public Affairs 19, no. 1 (1990): 1990–47; and Mac-Mahon, J., “Wrongful Life: Paradoxes in the Morality of Causing People to Exist,” in Coleman, J. Morris, C., eds., Rational Commitment and Social Justice (Cambridge, Ma.: Cambridge, (1998): 208–247.Google Scholar
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See note 11. I am defining “unfair advantages” here as all those arising from morally arbitrary criteria, such as class or race. Also, I am not supposing that all GLMs will be so easy to diagnose as these acne and memory examples. Undoubtedly, there will be many hard-to-assess, seemingly in-between GLMs that, in some ways, will and, in other ways, will not conceivably lead to an unfair caste system. In such cases, of course, we will need to develop more refined and precise criteria of demarcation, viz., of “what traits would contribute to unfair socioeconomic divisions in society.”.Google Scholar
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This objection is similar to that which claims that people have a “right to inherit a genetic endowment that has not been intentionally modified.” For counterarguments to such naôve claims, see. note 9, bottom;Juengst, E. T., Issue Ed., “Human Germ-line Engineering,” The Journal of Medicine and Philosophy 16, no. 6 (1991), including his “Germ-line Gene Therapy: Back to Basics”: 587–92, at 590.CrossRefGoogle Scholar
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Such reasoning, especially in the German context, may represent a hyper-sensitivity to past eugenics atrocities (cf. Susanne Boshammer et.al., “Discussing HUGO: The German Debate on the Ethical Implications of the Human Genome Project,” The Journal of Medicine and Philosophy 23, no. 3 (1998): 324–33.CrossRefGoogle Scholar
Believers might argue here that it is not “Nature,” but God, that makes these genetic decisions for us, and that, consequently, we have no right to tamper with God’s decisions. To this I answer that, if government should honor believer’s preferences not to have such GLMs because of their beliefs (which I believe should be the case), then government should honor people’s preferences to have these GLMs because of alternate beliefs (by not prohibiting these GLMs). Despite their belief that God is the determiner of our genes, believers should not thereby have the right to deny others the opportunity to undergo GLMs.Google Scholar
Of course, if it turned out, because of some kind of runaway social fad, that there were so many genetically similar ‘Hollywood types’ being born and breeding that dangers commensurate with narrowed gene pools arose, this would constitute enough risk to make these particular enhancements prohibitable.Google Scholar
One consensus that had emerged among the international medical community concerning germline therapy is that it should be resorted to only when somatic, and more traditional (and, supposedly then, safer), types of therapies are not as viable options. But this consensus is starting to change, with some seeing germline therapies, at least potentially, as far superior to these other types of therapy. E.g.: “Treating genetically based diseases by modifying only somatic cells results in the need to treat the same disease in each succeeding generation… Why not solve the problem definitively by modifying the germ cells so that the defect is not passed from one generation to another? (Brody, supra note 1, at 86).”.Google Scholar
Walters, Palmer, , supra note 9, at 110. We need to keep in mind, of course, that the same genes that boost our immune systems can just as easily weaken our immune systems. So altering these can only be allowed after we gain enough knowledge to insure that the former, and not the latter, transpires. Patients who receive large or frequent doses of antibiotics, who thus strengthen their immune systems in the short run, often actually thereby weaken their immune systems in the long run. Correspondingly, we would not want a similar process to take place on the germ cell level: We would not want to need to man-date GLMs to boost our immune systems, after earlier misguided GLMs caused this need in the first place.Google Scholar