FAQs on Human Genomics Studies

FAQs on Human Genomics Studies

Genomic Findings on Human Behavior and Social Outcomes

The need for socially responsible communication about genomics research is greater than ever. New research into genomic influences on traits such as intelligence, educational attainment, household income, and sexual behavior is drawing media attention and public scrutiny. These social and behavioral traits are known to be influenced by a combination of genetic, social, and environmental factors. But attempts to draw conclusions about the capabilities of individuals or groups of people based on genetics has an ugly history, infused with racism and other biases. Today, research on the genetic contributions to human behavior and social outcomes is still being misappropriated by those who are looking for evidence to justify their beliefs in inherent racial and social inequalities. In response, many genetic scientists have taken steps to pre-emptively avoid misconceptions and misapplications of their work by creating frequently asked questions (FAQs) to explain their findings in specific studies. These FAQs give the context, scope, and limitations of their research.

Between 2011 and 2013, the Social Science Genetic Association Consortium (SSGAC), an international research network of social scientists, geneticists, and medical researchers interested in genome-wide association studies (GWAS) on social science outcomes began thinking about how to ensure responsible media coverage of GWAS. Daniel Benjamin (University of California, Los Angeles), David Cesarini (New York University), Philipp Koellinger (University of Wisconsin–Madison), David Laibson (Harvard University), Christopher Chabris (Geisinger Health System), and Peter Visscher (University of Queensland) began working with ethicist Michelle Meyer (Geisinger Health System) and consulted Mary Carmichael, then an independent communications consultant. Mary Carmichael suggested that the SSGAC develop and distribute FAQs about their studies to help journalists avoid misinterpreting and misreporting findings. The SSGAC’s first FAQ appeared online in 2013, accompanying a GWAS of educational attainment. Since then, a number of research teams (including the SSGAC) have written FAQs to give the context, scope, and limitations of genomic studies on social and behavioral outcomes.

As scholars motivated by deep concern about the long history of misuse of genetic research, we believe these FAQs are socially responsible, commendable exemplars of science communication for both experts and general audiences. In the interest of maximizing accessibility to this growing database of helpful information, we have collected and catalogued these FAQs in this space, graciously hosted by The Hastings Center. This resource was developed in collaboration with researchers at the Stanford University Center for Biomedical Ethics (Dr. Daphne O. Martschenko), Columbia University Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics and The Hastings Center (Dr. Lucas J. Matthews), the Stanford University Graduate School of Education (Dr. Ben W. Domingue), and the University of Wisconsin, Madison Department of Sociology and School of Public Affairs (Dr. Sam Trejo). As genomicists continue to produce FAQs on new research in the years to come, we hope members of the general public, journalists, and research scholars will draw on our growing repository as a means of better understanding the significance and scope of these scientific discoveries. If you have FAQs that you want included in this repository, please email us (genomicsfaq@thehastingscenter.org). Our submission guidelines can be found here.

Daphne O. Martschenko, PhD
Stanford University Center for Biomedical Ethics

Lucas J. Matthews, PhD
Columbia University Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics
The Hastings Center