Wrestling with Social and Behavioral Genomics: Risks, Potential Benefits, and Ethical Responsibility
Principal Investigator: Erik Parens, The Hastings Center
Co-Principal Investigator: Michelle N. Meyer, Geisinger
Additional Steering Committee Members: Paul Appelbaum, Columbia University College of Physicians and Surgeons; Sandra Soo-Jin Lee, Columbia University; Daphne Oluwaseun Martschenko, Stanford University
Funders: Robert Wood Johnson Foundation, Russell Sage Foundation, JPB Foundation
Researchers now use genetics to investigate social and behavioral phenotypes, which are observable properties ranging from obesity to educational attainment. Increasingly, this research produces polygenic scores, which aim to capture, for any individual, the net effect on a phenotype of hundreds or thousands of genetic variants, each of which alone has a tiny influence. Polygenic scores could be used in research to control for genetic influences on a particular behavior or capability, thus making it easier to learn the effects of environments and interventions. Such scores could also be used to identify and direct scarce health care, educational, or other resources to people whose polygenic scores, combined with other biomedical and environmental predictors, suggest they are most in need. But polygenic scores, which so far have been developed using data mainly from populations of European ancestry, have limited applicability to—and thus limited benefits for—other populations. In addition to their potential for exacerbating health inequities, they also could detract attention from social determinants of health, education, and other important outcomes. More broadly, using genetics to explain social and behavioral attributes has an ugly history and is in danger of being appropriated by those who want to say that social and economic inequality is natural and unalterable.
To avoid those and other harms, some researchers have taken unusual steps, such as engaging communities with the most at stake in the research and creating public-facing documents to explain what their research can and cannot show. Still, thoughtful and knowledgeable critics have greeted the work with concern.
The purpose of this three-year project is to facilitate a frank and rigorous conversation among diverse experts who are hopeful about the benefits of this research and those who have concerns about it. Even if this working group cannot reach consensus regarding whether and why various forms of such research are or are not ethically acceptable, it will develop advice for a range of stakeholders about how to conduct the research and disseminate its results in ways that minimize its harms, and maximize its benefits.
Additional members of the project working group: Daniel Benjamin, Shawneequa Callier, Nathaniel Comfort, Dalton Conley, Jeremy Freese, Nanibaa’ Garrison, Bridget Goosby, Evelynn Hammonds, Paige Harden, Alicia Martin, Benjamin Neale, Rohan Palmer, James Tabery, Eric Turkheimer, and Patrick Turley.