by Paul Govern
The National Human Genome Research Institute (NHGRI) has awarded a four-year, $4 million grant renewal to Vanderbilt University Medical Center’s Center for Genetic Privacy and Identity in Community Settings (GetPreCiSe).
Co-directed by Ellen Wright Clayton, MD, JD, and Bradley Malin, PhD, GetPreCiSe brings together scholars from law, medicine, genetics, biomedical informatics, computer science, health policy, history, sociology, cultural studies and more.
The center was established in 2016 with an initial $4 million grant under the NHGRI’s Centers of Excellence in Ethical, Legal and Social Implications Research Program.
“Interest in the impact of genomics only continues to grow — among scientists, clinicians, lawmakers, artists, the public and an array of commercial entities,” said Clayton, Craig-Weaver Professor of Pediatrics and professor of Law. “At the center we’re focused on advancing understanding of the overall benefits and risks of the human genomics revolution. For the public, this realm of discovery and technical implementation raises any number of issues deserving careful and well-balanced study and consideration, not least the issue of privacy.
“We’re delighted that the NHGRI is continuing to fund this work.”
As Malin notes, recent years have seen new large-scale discovery efforts in human genomics, dramatic growth in direct-to-consumer genetic testing, and new laws and regulations governing data privacy and security.
“For all its promise, human genomics also carries the potential to disrupt our lives. This continued funding will allow our center to further investigate a number of pressing and fascinating matters, all with an eye to aiding the public’s response to this deepening era of discovery in the United States and beyond,” said Malin, professor of Biomedical Informatics, Biostatistics and Computer Science.
The center’s investigative agenda spans three broad areas: genetics and media, social science and law, and policy and computation. Some highlights: how direct-to-consumer genetic testing affects individuals, families, and communities; the impact that literature, film, television and advertising have on conceptions of genetic privacy and identity; whether family and social networks affect the choices people make about genetic testing and data sharing; how personal features such as race, sex and gender influence the behavioral economics of genetic data collection, sharing and use; and use of artificial intelligence and electronic health data for synthesizing fake “patients” as an aid to scientific discovery.
GetPreCiSe is supported by the National Institutes of Health (HG009034).