NHGRI funds new Centers for Excellence in Ethical, Legal and Social Implications Research

October 10, 2007

The National Human Genome Research Institute (NHGRI), part of the National Institutes of Health (NIH), today announced the establishment of two new centers to address the most critical ethical, legal and social questions faced by researchers and patients involved in genetic and genomic research.

Over the next five years, grants totaling more than $12 million will be awarded as part of the Centers for Excellence in Ethical, Legal and Social Implications Research initiative, launched by NHGRI in 2004. The new centers are being established at the University of North Carolina-Chapel Hill and the University of Pennsylvania in Philadelphia.

"Examining the emerging ethical, legal and social implications of genomic research is central to our goal of safely and effectively moving discoveries into the clinic," said NHGRI Director Francis S. Collins, M.D., Ph.D. "These centers will work to identify and address the most pressing issues being confronted by individuals, families and communities as a result of genetic and genomic research."

Each of the new centers will pull together a team of experts representing a broad range of disciplines, such as bioethics, law, behavioral and social sciences, clinical research, theology, public policy, and genetic and genomic research. The interdisciplinary nature of these teams will allow the centers to develop innovative research approaches focused on specific sets of issues that relate to the numerous applications and uses of genomic research, technologies, and information.

The centers' output will be critical in formulating and implementing effective and equitable health and social policies related to genomic research. In addition, the centers will create new environments to support the growth of the next generation of researchers interested in exploring the ethical, legal and social implications of genomics. Special efforts will be made to recruit potential researchers from under-represented groups.

"As genomic research begins to touch more of us in our daily lives, it is essential that rigorous studies are undertaken to ensure that ethical, legal and social issues stemming from genetics and genomics are taken into consideration in the development and implementation of policies," said Elizabeth Thomson, D.N.Sc.., R.N., of NHGRI's Ethical, Legal and Social Implications (ELSI) Research Program. "The centers' research and other activities will provide an important knowledge base from which to begin tackling these issues."

The new Centers for Excellence in ELSI Research, their principal investigators and their approximate total funding levels over five years are: Genetic and genomic research has traditionally focused on small groups of people with relatively rare diseases. But cheaper and more efficient technologies are making it feasible to launch efforts involving thousands of individuals, many of which are aimed at uncovering gene variants involved in common diseases. The Center for Genomics and Society will assemble an interdisciplinary team to conduct research focusing on the ethical, legal and social issues unique to large-scale genomics.

Specifically, the center's team will examine the impacts of discoveries from large-scale genomic research for individuals, families and populations, with a particular focus on studies with implications for specific racial, ethnic or other socially defined groups. In addition, the center will look at the effect of large-scale genomic research on informed consent, the regulation and use of DNA samples, and the control and dissemination of large and complex data sets. The center will also offer a research consultation service to genomic researchers. The research conducted at the center will contribute to the translation of genomic research findings into clinical or public health practice. This center will concentrate on the ethical, legal, and social factors associated with genetic technologies, such as genetic testing, with the potential to generate uncertainty and confusion among patients, relatives, doctors and health insurers. The overall goal of the Penn Center for ELSI Research is to develop tools that will help educate consumers, professionals, policy makers and insurers understand and cope with the certainty or uncertainty of results from genetic technologies.

Team members will conduct original research to explore issues related to uncertainty, including an historical analysis of the ethical, legal, and social consequences of prenatal testing; an assessment of patient and provider perceptions of the barriers and utility of using a preventive genetic test to identify the likelihood of future disease susceptibility; and an evaluation of the long-term psychological, social, and medical effects of genetic testing and counseling for breast cancer on African American women and their families.
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NHGRI's ELSI Research Program was established in 1990 as an integral part of the Human Genome Project to foster basic and applied research and to support education and outreach activities. The program, which is part of NHGRI's Division of Extramural Research, funds and manages studies related to the ethical, legal and social implications of genetic and genomic research, and also supports workshops, research consortia and policy conferences related to such topics. The ELSI Research Program is the largest sponsor of research on the ethical, legal and social aspects of biomedicine in the world. A list and summary of other Centers of Excellence in ELSI Research is available at http://www.genome.gov/25522195.

NHGRI is one of the 27 institutes and centers at NIH, an agency of the Department of Health and Human Services. For more information about NHGRI's ELSI Research Program, see www.genome.gov/10001618. For more information about NHGRI, see www.genome.gov.

The National Institutes of Health (NIH) -"The Nation's Medical Research Agency" - includes 27 Institutes and Centers and is a component of the U. S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

NIH/National Human Genome Research Institute

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