Since its birth 30 years ago, proponents of the Human Genome Project have promised that genetics research would yield untold health benefits for all of us. Indeed, in 1990, James Watson asserted that failing to move the project ahead and usher in those benefits as fast as possible would be “essentially immoral.”
The COVID crisis, however, offers a supremely unwished-for opportunity to scrutinize the proponents’ promise, and to recalibrate the hope and money we invest in genetics. Such scrutiny and recalibration can be small steps on the path to fulfilling our nation’s professed commitment to the health of all of us.
Recalibration is not abandonment. In the midst of the crisis, genetics-based research tools offer some rare opportunities for optimism. They make it possible to track the spread of the virus and to test for the presence of the virus in individuals, and they may help to create a vaccine that will protect the health of all of us.
In the midst of this crisis, however, it is impossible to ignore the obscenely and grotesquely disproportionate impact that the virus has on the health of some of us. Yes, it is likely that some individuals are genetically predisposed to be less or more susceptible to the virus. But no geneticist is suggesting that genetic differences are an important part of the explanation for why the virus impacts different social groups differently. No geneticist claims that genetic differences help to explain why a physician in northwestern Oregon says that Latinxs have been found to be “20 times as likely as other patients to have the virus.” Nor is any geneticist suggesting that genetic differences help to explain why, according to a Washington Post analysis, “counties that are majority-black have three times the rate of infections and almost six times the rate of deaths as counties where white residents are in the majority.”
Rather, it is a truism that those different impacts are due to the different social conditions to which different groups are exposed. The less access to decent jobs, housing, education, nutrition, clean water and air, the greater the likelihood that members of those groups will be exposed to the virus, the more underlying health conditions that will afflict those groups, and the greater the negative health impacts on members of those social groups.
And yet we continue to overinvest our hope in genetics, notwithstanding that with every passing year we understand in more detail why genetics can’t deliver as much as it once promised. Recently, the geneticist Francis Collins, who once led the Human Genome Project and who now directs all 27 of the National Institutes of Health (NIH), said to the Wall Street Journal, with admirable frankness and breathtaking understatement, “The genetic architecture of common diseases is turning out to be more elaborate than we might have guessed.” That is, because of the fabulous complexity of the pathways from genes to the sorts of common diseases (like diabetes) that make people more vulnerable to a virus like COVID, genetics has not been able to offer the sorts of health benefits that geneticists envisioned 30 years ago.
Despite the fact that we have known for years that genetics will not yield as many health benefits for any social group as were once envisioned, enthusiasm for genetics at NIH has not flagged. In 2016, the year NIH launched a major new genetics-focused research initiative, it spent well over half of its $26 billion budget for extramural research on investigations that could be linked to search terms that include gene, genome, stem cells or regenerative medicine.
That major new program—called All of Us—aims to tailor medical care to the genomes of individuals, much as tailors create clothes to fit their customers. To achieve that end, NIH is seeking to enroll 1 million people in the program and is doing so with rhetoric that departs strikingly from the rhetoric usually used to enlist people in health research.
Departing from the customary American invocation of autonomy in matters of health research, proponents of the All of Us Program are appealing to the value of solidarity. As philosopher and bioethicist Carolyn Neuhaus puts it in a forthcoming essay in a special collection of the Hastings Center Report, the All of Us program appeals “to sense of civic duty—on each one of us—on you, on me—to improve the health of fellow and future Americans.” That is, according to the All of Us program’s rhetoric, we have a civic duty, a solidarity-based ethical obligation, to participate in this research project, including donating our genomes to the project’s database.
Moreover, the All of Us program is explicit in its commitment to improving the health care of those of us in historically discriminated-against social groups. In fact, enthusiasts about All of Us have gone so far as to suggest that the program will help “to reduce and eventually eliminate health disparities.” The lead author of that piece did not work at the National Human Genome Research Institute, but at the National Institute on Minority Health and Health Disparities.
The problem here is not lack of good intentions, nor lack of a beautiful vision of health for all of us. The problem is with the lack of facts to support the hope that genetics can be a key to realizing that vision. The Human Genome Project has produced some truly profound health benefits for some individuals, most of which have to do with testing for, and treating, inherited cancers. And, again, the tools of genetics research may be key to bringing our current health care crisis to an end. But those tools will not reduce, much less eliminate, the health disparities that are produced by the unjust social conditions that are so excruciatingly obvious in our current crisis.
Of course, just investing less money and hope in genetics won’t reduce those disparities either. But it would be a small step in the right direction if our NIH were to develop a more realistic and forthright vision of the role that genetics can play in promoting the health of all of us.