Genomics is crowding out ways of reducing inequality, has thwarted medicine from advancing justice, and is creating new forms of social classification and surveillance. These are key messages of ''All of Us''? On the Weight of Genomic Knowledge, a new Hastings Center special report.
The overarching premise of the report is that genomic "can be a weight, a weight that has the potential to thwart--and historically has thwarted--medicine from genuinely advancing justice," writes Joel Michael Reynolds, co-editor of the report with Erik Parens, a senior research scholar at The Hastings Center.
The report asks if the focus on genomics is crowding out other, more effective ways of reducing health inequity. It warns that genomic knowledge can shore up scientifically discredited conceptions of race, which further entrenches structural racism.
The report also warns that the danger of treating social behaviors as genetic or based on racial classifications is that this kind of logic can spur on eugenics. The report also notes that the benefits of genetic advancements will likely go to the richest in society, further exacerbating inequality.
The special report highlights several ways that genomics can perpetuate inequality and structural racism:
- Genomics is crowding out ways of reducing health inequity.
- Despite mountains of data emphasizing the social and political nature of health disparities, the new focus racial difference in genomics has resulted in a shift from environmental causes to genetic causes.
- Health disparities quickly become imagined to be the result of DNA differences, as opposed to the intergenerational health effects of societal racism.
- Instead of measuring the environment and social conditions in meaningful ways, such as by studying how racial discrimination affects biology, genomics research reinforces the notion that race is determined by our genes.
- Genomic knowledge will likely go toward helping privileged people make their lives a little bit longer or a little bit better.
The special report consists of 10 essays written by scholars in philosophy, social sciences, medical anthropology, and disability studies. The essays include:
Health for Whom? Bioethics and the Challenge of Justice for Genomic Medicine by Joel Michael Reynolds. In this to the special report. Reynolds writes that the report begins with the "conviction and hope that justice is at the normative heart of medicine and that it is the perpetual task of bioethics to bring concerns of justice to bear on medical practice."
Summing up the special report, Reynolds writes that "taking the principle of justice seriously would lead us to better situate the gift and weight of genomics within the many practices for which we have evidence to bring about fairness and equity for human lives.
To implement these practices will require not only significant biomedical efforts but also political efforts that push typical clinical and bioethical concerns beyond their historical orbit." Reynolds is an assistant professor of philosophy and disability studies at Georgetown University and the inaugural Rice Family Fellow in Bioethics and the Humanities at The Hastings Center.
Conceptualizing Race in the Genomic Age by Catherine Bliss. This essay argues that a concept of race that presumes that there are discreet genetic groups of white, black, Asian, Native American, and Pacific Islander is a fallacy that will always lead to social inequality.
Bliss asks whether genomics can do more than merely avoid racism; can it contribute to antiracism projects? To promote social justice, she writes, "all of us across the sciences, throughout health policy, and in the wider public will need to reconceptualize race in terms of legacies of discrimination. We will need to shift our focus from molecular differences to social and political differences, especially when we conduct gene-environment analyses."
Bliss is an associate professor of sociology at the University of California, San Francisco.
Does Solidarity Require ''All of Us'' to Participate in Genomics Research? by Carolyn P. Neuhaus. This essay interrogates the idea that Americans have an ethical obligation to participate in genomics research, as an act of solidarity, particularly the federal government's "All of Us," which aims to create precision medicine and improve the health of everyone.
Neuhaus argues that while participating in research may be "a good thing to do," cultivating and expressing solidarity requires much more of us. Specifically, it requires recognizing another person or other creature "as, like ourselves, vulnerable to injustice and entails acting in ways that contribute to creating, reforming, and participating in institutions that are aimed at enhancing they're flourishing." Neuhaus is a Hastings Center research scholar.
Why and How Bioethics Must Turn toward Justice: A Modest Proposal by Jenny Reardon. To create genomics that offers more gifts than weights, Reardon argues, central attention must be paid to questions of justice and structural inequity.
It will necessitate building novel coalitions and collaborations that turn the attention of bioethical governance away from narrow individual questions such as, "Do I consent?" and toward the broader collective question, is this just?
Reardon is a professor of sociology and the founding director of the Science and Justice Research Center at the University of California, Santa Cruz, and Hastings Center fellow.
Reardon, J (2020) Why and How Bioethics Must Turn toward Justice: A Modest Proposal. Hastings Center Report. doi.org/10.1002/hast.1158.