How much enhancement is acceptable?
Paper Review of: Agar, N., Designing babies: morally permissible ways to modify the human genome, Bioethics (1995) 9: 1-15.


Journal: Gene Therapy Newsletter, 9 (1995), 7.
Author: Darryl R. J. Macer
One of the basic distinctions that has been common in discussions of the ethics of gene therapy is to accept its use for medical therapy but to reject its use for enhancement or eugenic aims. As discussed previously in this Newsletter, both the Council of Europe (1) and UNESCO (2) have recently released guidelines that continue this tradition, though UNESCO is not planning to outlaw somatic cell enhancement. There are certainly serious ethical and social reasons to place a limit on medical technologies such as gene therapy which have enormous implications and have been the focus of so much public attention (3). At present, the experimental use of gene therapy has been limited to life-threatening conditions. With limited resources we should continue to focus on the people most in need. Nevertheless, this fast moving field demands a close look at potential non-therapeutic applications.

Agar has published a very provocative, well written argument for a different way of separating "acceptable" and "unacceptable" applications to the usual therapeutic/eugenic distinction. He dismisses the arguments that eugenic goals would be a waste of money or reinforce social inequality, because society already accepts many similar technologies. In his view, these decisions should be dealt with in the same manner as established concerns about inequalities in environmental influences that significantly impact phenotype. For example, lack of educational opportunities may substantially limit ones development despite the genetic ability to exceed the present level of accomplishment. Instead, he tries to make a new boundary between acceptable (therapy) and unacceptable (enhancement) by defining a good life as "when a persons important or life-goals are matched by her capacities". He believes that many of the capacities that could be early targets of enhancement gene therapy will be adaptations of things they already do, such as the ability for thinking better. However, he draws the line at life goals. He argues that human life goals may more often be novel, and therefore we would be changing human beings more, and unethically, if we target goals rather than only enhancing existing ability.

This distinction between capacities and goals makes some sense. However, we are still left with the important issue of where to draw the line within enhancement of capacity or ability. He does agree that some cases of genetic intervention are unethical, such as causing disease, or changes intended to have consequences for society. However as soon as we discuss what is good or bad we may find disagreement. For example he gives the example that creation of super intelligent or super strong individuals is wrong, however some in the future may disagree given the amount of money and time that people spend on reaching such goals today.

These are significant concerns about enhancement engineering will evolve over time, which demands a current and continuing public debate. While solid ethical guidelines have eased public concerns, some of the philosophical debate on the subject has been nonsense, and in a following paper in the same journal, Persson discusses "Genetic therapy, identity and the person-regarding reasons" (4) refuting claims that non-existent babies do not have any ethical "interests" in germline gene therapy because they are not yet persons (5), which almost everyone except some abstract philosophers already knew! It appears that the philosophy has caught up with what most parents knew a long time before. There is still much diversity in the philosophical and religious writings on gene therapy, but I do see a trend among academicians to support some forms of enhancement. Even some Catholic views may be open to some practices of enhancement engineering (6). A continual public dialogue and continual education of the public on the progress of scientific discovery and capabilities is critical to the safe and ethical development of the field.

Germline gene therapy has been very cautiously discussed (8). The important thing is that these issues are being discussed openly and calmly. Although some dismiss the debate as premature because it may take a decade for scientific achievements to make this approach feasible and the continual progress in the safety of gene transfer will substantially alter the discussion, it is high time that this discussion develops. Although some advocate a completely free supermarket approach to the availability of gene therapy products, there are some significant ethical arguments to make us rethink the limits of enhancement engineering. Let us hope that more people will join in this debate in a productive manner because the demands for "cosmetic" uses of gene therapy technology will likely come sooner than we think.


References:

1. Nelki S, Gene Therapy Newletter (Sept/Oct 1994), 22-3.
2. Macer D, Gene Therapy Newletter (Nov 1994), 4-5.
3.Wivel NA, Walters L, Science (1993) 262: 533-538.
4. Persson I, Bioethics (1995) 9: 16-31.
5. Zohar NJ, Bioethics (1991) 5: 275-88.
6. Archer, L. "Gene therapy in catholic thought", International J. Bioethics 5 (1994), 229-33.
7. Genetic Engineering News (Dec 1994), 12, 35.
8. Symposium in Politics & Life Sciences (1994) 13: 217-48.


To a related paper: Macer, Darryl (1995) Paper Review: "Can human genetic enhancement be prohibited?", Gene Therapy Newsletter, 11, 6-7.

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