Written by: Gloria Kosir
Anya Prince, the David H. Vernon Professor in Law, has been working on a four-year research project with the University of North Carolina’s (UNC) Center for the Ethical, Legal, and Social Implications (ELSI) of Biotechnology.
The project, “Beyond the Medical: The ELSI of Polygenic Scores for Social Traits,” is entering its final year and is funded by the National Human Genome Research Institute of the National Institutes of Health (NIH). As a co-Principal Investigator, Prince is working to finalize case studies and help manage the team with Jean Cadigan, professor of social medicine at UNC.
Polygenic scores (PGS) can help determine whether an individual is at high risk of developing a complex disease, like heart disease or diabetes, by measuring thousands of genetic variants at once. However, the emerging field of sociogenomics develops PGS to measure genetic contributions to social and behavioral factors, attempting to predict things like risk tolerance, income, educational attainment, sexuality, and optimism, which some fear will cross ethical lines.
The aim of the project is three-fold. First, it strives to map the current trends and potential development of sociogenomic PGS usage. It also seeks to engage with those involved in sociogenomics research, including biobank participants, researchers, and social scientists, to examine and assess their attitudes. Finally, the project’s legal and policy analysis will provide insight on how well the existing rules protect against misuse and harm, as well as how to promote possible benefits.
The Beyond the Medical project uses a set of case studies the team developed to analyze the use of sociogenomic PGS in social settings. The case studies present a variety of ethical implications of sociogenomics, including legal uncertainties, prenatal testing for social traits, and potentials for group harm. They are based on empirical work from the project, including focus groups of biobank participants and interviews of researchers.
“The goal of the case studies is to provide researchers and trainees working in the field of social and behavioral genetics with a tool to discuss the ethical and societal implications of their research,” Prince said. She is an author of six of the seven published studies and has worked with the Beyond the Medical team since it began in 2022.
The grant project has looked at other ethical issues related to sociogenomics, including exploring how scientists and researchers conceptualize the blurry line between which traits are medical and which are social.
In the article “Distinguishing social and medical traits: perspectives of scientists using polygenic scores,” the authors write, “We argue that this ambiguity has significant implications for how PGS research is conducted, interpreted, and regulated, calling for a reexamination of regulatory strategies that rely on this distinction.”
“This is a rapidly developing area of science that risks getting ahead of ethical guidance and legal regulation. The goal of our project is to provide tools to researchers and policymakers alike to anticipate and mitigate the potential harms of the science, while maximizing the benefits,” Prince said.
Prince is an expert in health and genetic privacy with a particular focus on genetic discrimination, the health privacy implications of big data, and the ethical, legal, and social implications of genomic testing.