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NHGRI Gives $11M to UNC and UPenn to Build ELSI Centers of Excellence

NEW YORK (GenomeWeb News) — The National Human Genome Research Institute will spend $11 million to help two US universities establish Centers of Excellence to address the ethical, legal, and social issues surrounding genomics and genetics in research, medicine, economics, and politics, the NHGRI said today.
Over the next five years, the University of North Carolina at Chapel Hill and the University of Pennsylvania will use these grants to establish the Centers of Excellence in Ethical, Legal and Social Implications Research.
"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," NHGRI Director Francis Collins said in a statement.
Collins said the centers will focus on "the most pressing issues being confronted by individuals, families, and communities as a result of genetic and genomic research,” including genetics and race and genetic privacy.
Each of the new centers will pull together a team of experts representing a broad range of disciplines, including bioethics, law, behavioral and social sciences, clinical research, theology, public policy, and genetic and genomic research.
The University of North Carolina will use $5.6 million to fund The Center for Genomics and Society, which will use an interdisciplinary team to study the ethical, legal, and social questions surrounding large-scale genomics research, such as studies aimed at specific racial, ethnic, or other socially defined groups.
The UNC center also will study the effect of large-scale genomics research on informed consent, use and regulation of DNA samples, and the control and spread of data sets from large studies, according to the NHGRI.
The University of Pennsylvania, meantime, will receive $5.4 million to create the Penn Center for ELSI Research, which will study the ethical, legal, and social factors associated with the development and expansion of genetic testing technologies, the NHGRI said.
The Penn Center's researchers will explore such themes as the consequences of prenatal testing, patient provider perceptions of the barriers and utility of a preventive test for disease susceptibility, long-term effects of medical effects of genetic testing, and counseling for breast cancer on African American women and their families.
Additional information about existing ELSI Centers of Excellence can be found here.

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