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Wednesday, May 18, 2016

NIH funds new studies on ethical, legal and social impact of genomic information

National Institutes of Health (NIH)
 Tuesday, May 17, 2016

....The grants, totaling approximately $15 million over four years (pending available funds), 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 use $4,155,172 over four years to 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. The work builds on previous NHGRI-supported research.
  • Genetic Privacy and Identity in Community Settings
    Researchers at Vanderbilt University School of Medicine in Nashville, Tennessee, will study privacy risks associated with genomic information. Ellen Wright Clayton, M.D., J.D., and Bradley Malin, Ph.D., will use $4,012,641 over four years to 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. A grant for $3,611,308 over four years 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.
The following grants have been awarded: 1RM1HG009038-01; 1RM1HG009034-01; 1RM1HG009037-01; and 1RM1HG009042-01.
NHGRI is one of the 27 institutes and centers at the National Institutes of Health. The NHGRI Extramural Research Program supports grants for research, and training and career development at sites nationwide. Additional information about NHGRI can be found at


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