Fear of Human Germ-line Editing

This week’s issue of Science contains an editorial by Victor J. Dzau (President, U.S. National Academy of Medicine), Marcia McNutt (President, U.S. National Academy of Sciences), and Chunli Bai (President, Chinese Academy of Sciences) urging “international
academies to quickly convene international experts and stakeholders to produce an expedited report that will inform the development of these criteria and standards to which all genome editing in human embryos for reproductive purposes must conform, and to engage scientific bodies around the world in this effort.” According to them our ability to edit the human germ-line “has outpaced nascent [italics added for emphasis] efforts by the scientific and medical communities to confront the complex ethical and governance issues that they raise.”

The occasion, of course, is the report from the Second International Summit on Human Genome Editing held last month in Hong Kong during which Dr. He Jiankui working in Shenzhen announced successful germ-line editing in twin embryos to allegedly confer resistance to HIV. (I will leave aside for another occasion a discussion of how scientifically plausible this claim is—I am skeptical, to say the least.) Our three Presidents were unequivocal in condemning Dr. He: “To maintain the public’s trust that someday genome editing will be able to treat or prevent disease, the research community needs to take steps now to demonstrate that this new tool can be applied with competence,  integrity, and benevolence. Unfortunately, it appears that the case presented in Hong Kong might have failed on all counts, risking human lives as well as rash or hasty political reaction.”

The Science editorial troubles me on many fronts and I will likely be discussing it more than once in these posts. Let me just note two points here. First, the editorial claims that we are in a situation in which scientific developments have outpaced the formulation of policy. To the extent that this is true, it is a failure of the leaders of the genomics research community rather than any malfeasance on the part of individual researchers eager to explore the new possibilities opened up by CRISPR-mediated gene editing. The prospect of human germ-line gene editing has been around since the 1980s when it was actively discussed as a possible outcome of a proposed Human Genome Project.

Proponents of the HGP realized that the new genomics would have social impacts and the project included, right from the beginning, the ELSI program to study ethical, legal, and social implications. Funding for ELSI The ELSI funded many worthwhile studies, especially in its early days (and, for full disclosure: I was one of those who were so funded). Yet, almost thirty years we find ourselves unprepared when presented with the immediate prospect of edited human germ-lines (thanks, of course, to the advent of CRISPR). It appears ELSI money was not all that well-spent and the responsibility must lie mainly with the bioethics community which received the lion’s share of the funding but has, arguably, contributed minimally to the practical problems we face including, of course, the social regulation of human germ-line editing. However the biological research community is also at fault: it could have done much more to insist that policy issues receive substantive treatment. The Science editorial appears to me to be rather disingenuous in ignoring this history.

Second, and perhaps even more important, I fail to see what normative principle or rule or what regulation Dr. He has violated. There has been a shrill chorus of denunciations of what he has done. But these have no been accompanied by arguments. Now, since I am skeptical of Dr. He’s scientific claims, I do acknowledge one ethical problem: he may be promising parents benefits that are highly unlikely to occur. (But hype was always a principal component of the HGP and is now an intrinsic feature of discussions of CRISPR. Dr. He is hardly an exception.)  As far as regulation is concerned, as the Science editorial implicitly acknowledges, we do not have the pertinent rules in place at any level. Dr. He can hardly be credibly criticized for violating non-existent rules.

That leaves open the possibility that he has violated some widely-held and defensible ethical norms. But what are they? In the Science editorial, the Presidents of the U.S. National Academies of Science and Medicine offer to take the lead in developing regulations to cover human germ-line editing. However, in December 2015 these two academies already hosted an international summit meeting on gene editing. One outcome of that meeting was a working group on the scientific, ethical, and social issues raised by new technologies, especially CRISPR. The group’s report was published in 2017.

That report did not call for an outright ban on human germ-line editing in embryos for research. However, it recommended limiting both somatic cell and germ-line gene editing to prevent disease. This is exactly what Dr. He has claimed to have done. So, why is the chorus of disapproval directed at him rather than the authors of the 2017 report? The best that I can come up with is that critics are worried about safety. But, once again, where are the standards that should not be violated?

Let me end by adding that philosophers (including me) have also been discussing human germ-line editing. There seems to be widespread though not universal consensus that editing to remove disease is morally acceptable. There is also a small minority of philosophers who are in favor of genetic enhancement but that is a topic for another day. Meanwhile I sympathize with Dr. He.

 

 

2 Replies to “Fear of Human Germ-line Editing”

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