Beyond the Medical: The ELSI of Polygenic Scores for Social Traits
Funded by the National Institutes of Health, National Human Genome Research Institute R01HG012402
|Jean Cadigan, PhD, M-PI||Anya Prince, MPP, JD, M-PI|
|University of North Carolina, School of Medicine||University of Iowa, College of Law|
|Shawneequa Callier, PhD, Co-investigator||Karen Meagher, PhD, Co-investigator|
|George Washington University,
School of Medicine and Health Sciences
|Mayo Clinic, Department of Biomedical Ethics|
|Margaret Waltz, PhD, Research Associate||Courtney Cantor, Graduate Research Assistant|
|University of North Carolina, School of Medicine||University of North Carolina, School of Medicine|
|Kriste Kuczynski, Project Manager|
|University of North Carolina, School of Medicine|
In traditional predictive genetic testing, like for BRCA or Huntington’s Disease, single gene variants are analyzed to determine whether an individual is at high risk of developing a disease. The vast majority of diseases, however, are polygenic— caused by many different genes. Polygenic scores (PGS) have been heralded for their promise to predict risk for these more complex diseases like heart disease or diabetes by measuring the contribution of hundreds or thousands of genetic variants at once. Yet beyond prediction of health outcomes, the realm of ‘sociogenomics’ is developing scores measuring genetic contributions to social and behavioral factors, such as risk tolerance, income, educational attainment, sexuality, or optimism. Sociogenomic PGS often blur the lines between medical and social outcomes, such as with scores for drinking, smoking, or reproductive behavior. Proponents of sociogenomic PGS cite the potential for this research to increase understanding of the interplay between genetic and environmental factors, to account for genetic factors in social science research, and to create personalized social interventions akin to personalized medicine. But others worry that sociogenomic PGS findings could lead to stigma, discrimination, and an exacerbation of existing social disparities.
This project addresses the following research questions:
- What are the current trends and potential future development of sociogenomic PGS and what are the possible uses of scores in social settings?
- How do various stakeholders perceive the benefits and risks of sociogenomic PGS?
- How well do existing laws and policies protect against the potential harms of sociogenomic PGS and promote the benefits?
- Using horizon scanning methodologies, map the landscape of sociogenomic PGS, their potential uses, and how sociogenomic research findings are presented to and consumed by the public.
- Enlist those involved in the pipeline of sociogenomics research (biobank participants, PGS researchers, and social scientists) to examine and assess their attitudes toward the range of harms and benefits of sociogenomic PGS, the blurring of the line between social and medical traits, and the implications of varying uses of PGS in social settings.
- Conduct a legal and policy analysis of how current legal rules protect against potential misuse and/or promote possible benefits of sociogenomic findings.
The product of this project will be a set of case studies designed to help policy makers, the research community and the public anticipate and mitigate the potential harms of employing sociogenomic PGS in various social settings, while identifying and maximizing potential benefits.
Barbara Harrison, MS, CGC, Howard University College of Medicine, Washington, DC
Gail Henderson, PhD, University of North Carolina School of Medicine, Chapel Hill, NC
Eimear Kenny, PhD, Mount Sinai University, Icahn School of Medicine, New York City, NY
John Novembre, PhD, University of Chicago, Chicago, IL
Erik Parens, PhD, The Hastings Center, Garrison, NY