Whose Genome? Which Genetics?

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This article refers to:

Rare Disease, Advocacy and Justice: Intersecting Disparities in Research and Clinical Care

Is It Just for a Screening Program to Give People All the Information They Want?

Promoting Equality in the Governance of Heritable Human Genome Editing through Ubuntu: Reflecting on a South African Public Engagement Study

The Promise and Reality of Public Engagement in the Governance of Human Genome Editing Research

Bounded Justice, Inclusion, and the Hyper/Invisibility of Race in Precision Medicine

DISCLOSURE STATEMENT

The author is a member of the external advisory board for the Oregon Health and Science University Center for Embryonic Cell and Gene Therapy. The author is a pro bono member and does not receive an honorarium for their service.

Notes

1 As an example of the latter view, Joan Roughgarden (Roughgarden 2013, 14–15) cites the pioneering geneticist H. J. Muller. Muller argued that in an asexually reproducing population of organisms deleterious mutations would persist and accumulate in successive generations over time, due to factors that made it difficult for natural selection to act to weed these out. This effect has since come to be known as “Muller’s Ratchet” (Felsenstein 1974). Though his point was specifically about asexual organisms, Muller applied it to human beings in a 1950 paper in the American Journal of Human Genetics (Muller 1950). Muller argued that the human genome was accumulating deleterious mutations, that this could be seen in the increasing prevalence of rare disorders that (he believed) could be traced to the persistence of these mutations, which were the result of, as he put it, “improvements in living conditions as well as in medicine” which allowed individuals with these “heterozygous genetic weaknesses” to live to reproductive age (Muller 1950, 144). The solution was clear: “…there is after all only one way to avoid a full-fledged resumption of ordinary natural selection [that is, to allow individuals with maladaptive phenotypes to die before reaching reproductive age]. That method, whether we like it or not, is purposive control over reproduction, exercised in such wise as to anticipate and forestall the need for natural selection of the usual, externally imposed type.” (Muller 1950, 150). The author of On Good Birth would find much to recommend in this view. Thanks to Jay Odenbaugh and Brian McLoone, for discussion of this point about Muller’s Ratchet.

2 MacIntyre would most likely disagree with the analogy to his views about practical rationality in this paper. The disagreements MacIntyre is diagnosing are supposed to be of a much more fundamental kind than those discussed here (for discussion see MacIntyre 1988, 4–11).

3 See, for example, the recent WHO Expert Advisory Committee Report (WHO Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing 2021).

4 “All of Us” is the title of the US National Institutes of Health’s precision medicine initiative, which includes (but is not only about) genetic data; see “All of Us Research Program Overview,” at https://allofus.nih.gov/about/program-overview (retrieved 11 Apr 2023).

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Funding

The author(s) reported there is no funding associated with the work featured in this article.