Yesterday’s post on this blog, by Steve Phillips, warned that a narrow, “rules limited” approach to bioethics reduces ethics in science and medicine to matters of regulatory compliance and risks making thoroughly logical conclusions based on faulty premises that are adopted without regarding “deeper ethical thinking” for which scientists’ thinking must be brought under the discipline of broader humanitarian reflection if correct basic notions of what it is to be human, and what humans should be up to, are to be arrived at.
A different but closely related way to look at this was suggested by John Evans of the University of California, San Diego in his contribution to Human Flourishing in an Age of Gene Editing, a new collection of essays, edited by Erik Parens and Josephine Johnson. In brief, Prof. Evans commented that too much of bioethics is “thin,” reduced to the Belmont principalism (respect for persons/autonomy; beneficence/nonmalificence; justice) governs human subject research. This “thin” bioethics is convenient for regulators to use to derive a manageable set of rules, and for scientists to, if you will, hide behind (my expression, not Prof. Evans’s). Rather, he writes, we must be willing to criticize the assumption that all we need to ask about technology is how to use it, and seek a deeper wisdom about what is a good or worthy human life, for individuals or communities. In making this argument, he appeals to “critics of technology,” both politically conservative (Leon Kass) and politically liberal (Jacques Ellul). Jacques Ellul! How often does anyone hear him mentioned anymore? How many of us have read him? (I venture fewer than should!)
This criticism of worshipping at the Belmont altar, if you will, is hardly new, but it’s critical, especially when something as profound as heritable human gene editing is being considered. You see, Belmont principalism is quite robust when asking how to deal with clinical trials. But it really most closely applies to things like regulated drug development, and germline gene editing goes far beyond drug development. It isn’t drug development at all, and cramming it into the conceptual framework of drug development is fundamentally misguided.
Nonetheless, the International Commission on the Clinical Use of Human Germline Genome Editing appears to be proceeding merrily along the drug development path. The second meeting, in London, is next month; one can sign up for a webcast. Just check out the agenda, especially day 2’s planned sessions on risk-benefit analysis and defining “a translational pathway.” That language applies to new therapy development, not fundamental alterations of human inheritance.
One should keep in mind also that the assumption one can assess risks and benefits is only as good as one’s data. This week it is reported that scientists have retracted an analysis suggesting that babies edited for an HIV-susceptibility gene might be at risk of relatively short life spans, something this blog poster readily jumped on in his June 6, 2019 post. But, then again, so did the prestigious journal Nature Medicine, so I guess I shouldn’t beat myself up too much. Seems the researchers didn’t define matters carefully enough. Even if this particular analysis, from a large database of human genetic data, was flawed, similar analyses in the future might be helpful, it is argued. Until more is known, it is further argued, one should not seize on a retracted analysis to infer a full “green light” to edit unborn babies’ genes. But that may take “thicker” bioethics than whatever risk-benefit analysis we think we can muster now.