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NIH Funds Studies on Ethical, Legal Impact of Genomic Data

June 8, 2016
by David Raths
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Research to include precision medicine, privacy risks, prenatal testing

Four new grants from the National Institutes of Health will support research on the ethical, legal and social questions raised by advances in genomics research and the increasing availability of genomic information.

With the funding, interdisciplinary centers at Vanderbilt University, Johns Hopkins University, University of Utah and University of Oklahoma will examine the use of genomic information in the prevention and treatment of infectious diseases; genomic information privacy; communication about prenatal and newborn genomic testing results; and the impact of genomics in American Indian and Alaskan Native communities.

The centers are being funded through the National Human Genome Research Institute's (NHGRI) Centers of Excellence in Ethical, Legal and Social Implications Research (CEER) program.

“Many ethical and social problems are not solved by experts in a single discipline alone,” said Joy Boyer, senior program analyst in NHGRI's Ethical, Legal and Social Implications Research Program, in a prepared statement. “The CEER program brings together experts from often disparate fields who speak different languages and forms centers where they can study issues across disciplines. These grants are diverse and forward-looking, while also relevant to public health and medicine today."

The CEER program, established in 2004, is designed to bring together experts in wide-ranging fields — bioethics, law, behavioral and social sciences, epidemiology, public health, public policy, genomics and clinical research — to study the potential societal implications of genomic information and research. CEER projects also help inform public policy and research guidelines, in addition to educating the next generation of researchers.  

The grants, totaling approximately $15 million over four years, will support the following research projects:

• Ethical, Legal and Social Issues for Precision Medicine and Infectious Disease. Gail Geller, Sc.D., Jeffrey Kahn, Ph.D., and colleagues at the Johns Hopkins Berman Institute of Bioethics and Johns Hopkins University in Baltimore will examine the ethical implications of using genomic information to help manage the prevention, control and treatment of infectious diseases. The researchers will develop and conduct three pilot projects that study how genomic information affects infectious disease research, public health policy and clinical practice.

• Genetic Privacy and Identity in Community Settings. Researchers at Vanderbilt University School of Medicine in Nashville, Tenn., will study privacy risks associated with genomic information. Ellen Wright Clayton, M.D., J.D., and Bradley Malin, Ph.D., will examine factors that influence how people perceive such risks. The researchers will examine the effectiveness of legal and policy efforts to reduce privacy risks, and study the likelihood that lapses in protecting genomic information allow people to be identified. They will develop policies to prevent the loss of privacy that could lead to the use of personal genomic information for unintended purposes, such as to discriminate in decisions about employment and insurance.      

• Utah Center of Excellence in Ethical, Legal and Social Implications Research. Jeffrey Botkin, M.D., M.P.H., and his colleagues at the University of Utah in Salt Lake City are expanding on research on prenatal testing already supported by NHGRI. A grant for $3,881,732 over four years will enable the researchers to study how family members communicate about prenatal and newborn screening, including how test results and risks are communicated, decision-making and couples communication.

• Center on American Indian and Alaska Native Genomic Research. At the University of Oklahoma in Norman, researchers Paul Spicer, Ph.D., Amanda Cobb-Greetham, Ph.D., Cecil Lewis, Ph.D., and their colleagues will examine how the use of genomic information in medical care could potentially impact American Indian and Alaska Native communities and health care systems. The grant will allow the university to partner with the Chickasaw and Lakota Sioux tribes and communities and the Southcentral Foundation in Anchorage, Alaska, to study awareness, knowledge and attitudes about genomics in these communities. The collaboration will help create culturally appropriate research and education programs, as well as tools to develop similar programs in other communities.