Keeping Our Genetic Information Private

The Importance of Keeping Our Genetic Information Private Cannot Be Overstated.

Researchers at Vanderbilt University School of Medicine have received a four-year, $4-million grant from the National Institutes of Health to establish a new center for the study of privacy concerns associated with the use of genomic information, the NIH announced today, May 17.

The Vanderbilt Center for Genetic Privacy and Identity in Community Settings will examine the likelihood that lapses in protecting genomic information allow people to be identified, how people perceive such risks, and how effective legal and policy efforts are in reducing them.

Ellen Wright Clayton, M.D., J.D., the grant’s co-principal investigator with Bradley Malin, Ph.D. said:

We’re really broadening our horizons to think about how history and public opinion and literature affect the way individuals and communities think about privacy concerns.

“Ultimately the goal is to develop policy recommendations that address the complexity of what’s at stake,” said Clayton, the Craig-Weaver Professor of Pediatrics, and a nationally recognized expert on ethics, law and medicine.

Vanderbilt’s is one of four grants awarded through the Centers of Excellence in Ethical, Legal and Social Implications Research (CEER) program of the National Human Genome Research Institute to address questions raised by advances in genomics research and the increasing availability of genomic information.

The other awardees are Johns Hopkins University, University of Utah and University of Oklahoma.

The Vanderbilt effort will be truly “trans-institutional,” said Malin, associate professor of Biomedical Informatics and Computer Science and an expert on genomic information privacy issues.

Faculty members from more than a dozen academic departments at Vanderbilt University and Vanderbilt University Medical Center (VUMC) will be involved. Co-investigators include:

  • Melinda Buntin, Ph.D., chair of the Department of Health Policy;
  • Jay Clayton, Ph.D., the William R. Kenan Jr. Professor of English and director of the Curb Center for Art, Enterprise and Public Policy;
  • Nancy Cox, Ph.D., the Mary Phillips Edmonds Gray Professor and director of the Vanderbilt Genetics Institute;
  • Sarah Igo, Ph.D., associate professor of History, Law, Sociology and American Studies;
  • Lydia Jones, J.D., adjunct professor of Law and an expert on privacy law;
  • Claire Sisco King, Ph.D., assistant professor of Communications Studies;
  • Melissa McPheeters, Ph.D., research associate professor of Health Policy and Medicine;
  • Laurie Novak, Ph.D., assistant professor of Biomedical Informatics and an organizational anthropologist – a field that studies how things work in the real world;
  • Dan Roden, M.D., the William Stokes Professor of Experimental Therapeutics and VUMC senior vice president for Personalized Medicine;
  • Chris Slobogin, J.D., the Milton R. Underwood Professor of Law, and professor of Psychiatry;
  • Lijun Song, Ph.D., associate professor of Sociology;
  • Yevgeniy Vorobeychik, Ph.D., assistant professor of Computer Science and Computer Engineering;
  • Consuelo Wilkins, M.D., associate professor of Medicine, director of the Meharry-Vanderbilt Alliance and an expert on community engagement in research; and
  • Myrna Wooders, Ph.D., professor of Economics.

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