Last updated: November 15, 2013
NHGRI announces grants to the Centers for Excellence in Ethical, Legal and Social Implications Research Program
By Steven Benowitz
Associate Director of Communications, Extramural Research Program
How will families respond to information about their future children's genetic risks? What might be the impact of providing information on the genomics of psychiatric conditions to patients, families and physicians? How does the genome affect a person's response to the flu virus and vaccine, and what ethical issues might this raise?These and other questions will be investigated by researchers supported by the Ethical, Legal and Social Implications (ELSI) research program at the National Human Genome Research Institute (NHGRI)'s Division of Genomics and Society.
To research these questions, NHGRI awarded two Specialized Center grants and three Exploratory Center grants this past summer under its Centers for Excellence in Ethical, Legal and Social Implications Research (CEERs) program. The CEERS program, established in 2004, brings together experts in bioethics, law, behavioral and social sciences, clinical research, theology, public policy, and genetic and genomic research to develop innovative, interdisciplinary research approaches related to genomic research.
"One of the major goals of these programs is to better understand the ethical implications of the science, which we hope in turn will help inform the development of future research efforts," said Joy Boyer, senior program analyst in the division's ELSI program. All centers also focus on translating research into formats that can be used in the development of research, health and social policy options, she added.
The newly funded grants will do the following:
- The Center for Genomics and Society at the University of North Carolina at Chapel Hill, led by Gail Henderson, Ph.D., received a Specialized Center grant for $5.8 million to design, conduct and assess the ethical, legal and social implications of a genomic screening trial, focused on rare mutations that place people at risk for preventable conditions and on the assessment of genomic risk for common disease.
- With a Specialized Center grant award of $5.2 million, the Center for Research on the Ethical, Legal and Social Implications of Psychiatric, Neurologic and Behavioral Genetics at Columbia University Medical Center in New York City will study prenatal screening and its impact on couples, and the use of psychiatric and behavioral genetic information in the courts. Paul Appelbaum, M.D., will act as the project's principal investigator.
- At the University of Utah Center for Excellence in ELSI Research in Salt Lake City, Jeffrey Botkin, Ph.D., and his colleagues will research the use of genomics in prenatal and newborn screening. With a three-year Exploratory Center grant of nearly $790,000, they will develop and conduct two pilot projects on how screening information and choices are communicated to couples. Investigators would like to develop and formally evaluate communication strategies and tools to support informed decision-making in these contexts.
- With its $850,000 Exploratory Center grant, a team at Johns Hopkins University in Baltimore will establish a center called Genomic Uses in Infectious Disease and Epidemics, or GUIDE. Jeffrey Kahn, Ph.D., Gail Geller, Sc.D., and colleagues at the Johns Hopkins Berman Institute of Bioethics will explore ethical issues that surround the application of genomics to infectious disease and epidemics. A multidisciplinary team of experts in genomics, immunology, infectious disease, bioethics, epidemiology and policy will focus initially on pandemic influenza and hepatitis C.
- Investigators at the Kaiser Permanente Division of Research and the University of California, San Francisco are using their Exploratory Center award to create a Center for Transdisciplinary ELSI Research in Translational Genomics. Barbara Koenig, Ph.D., Carol Somkin, Ph.D., and colleagues plan to use the $778,000 grant to conduct small pilot projects to better understand barriers to moving genomics from the research lab to the medical clinic. They will also explore human research subject protection issues and genomic data access and management.