Centers for Excellence in ELSI Research Awarded Grants

National Human Genome Research Institute

National Institutes of Health
U.S. Department of Health and Human Services


Centers for Excellence in ELSI Research (CEER) Awarded Grants

University of Washington Center for Genomics and Health Care Equality

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Faculty
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Wylie Burke, M.D., Ph.D., $9.5 million (FY 2004-2014)

This center conducts research on the ethical, legal and social factors that influence the translation of genetic information to improved human health. It is dedicated to addressing two overarching themes resulting from the clinical integration of genomics: the need to define criteria for clinical integration that lead to clinically and socially appropriate applications of genomic health care, and the need for a translational pathway that incorporates the goal of reducing health and health care disparities among the medically underserved. The center's goal is to develop methods to inform all segments of society about technological advances, and to improve the mechanisms for obtaining input from diverse populations to help to identify and assess policy options for addressing these challenges.

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Stanford University School of Medicine Center for Integration of Research on Genetics and Ethics

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Mildred Cho, Ph.D., $9 million (FY 2004-2014)

This center studies the interaction of genomic research with society, with an emphasis on the genomics of behavior.  Its goals are to 1) to enhance the incorporation of ethical and societal considerations into the practice of genomic research on behavior through identifying the issues raised by such research; 2) to conduct scholarly studies that inform the ethical practice of research; and 3) to develop mechanisms that enhance the incorporation of ELSI considerations into research. 

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The Duke Center for the Study of Public Genomics

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Research
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Robert Cook-Deegan, M.D., $9.3 million (FY 2004-2014)

This center assembled a team to gather and analyze information about the role of publication, data and materials sharing, patenting, database protection and other practices that may affect the flow of information in genomics research. Research pertaining to these topics contributes to the understanding of how information flow influences development, commercialization and use of genomic products and services that may benefit human health.

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Case Western Reserve University Center for Genetic Research Ethics and Law (CGREAL)

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Research
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Publications

Patricia Marshall Ph.D. and Richard Sharp, Ph.D. (formerly Eric Juengst, Ph.D.), $8.2 million (FY 2004-2013)

This center will study the ethical issues in the design and conduct of human genetic research, including issues regarding the protection of human subjects in research. After first surveying existing ethical, legal and social implications research, and current genetic research regulations and guidelines to determine how adequately they address present and emerging ethical concerns, the center will conduct research and develop resources that will contribute to stronger policies and guidelines in genetic research.

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Center for Genomics and Society at University of North Carolina-Chapel Hill

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Research
Faculty
Publications

Gail Henderson, Ph.D., $12.2 million (FY 2007-2017)

The Center for Genomics and Society is a scale-up of the University of North Carolina Exploratory Center Grant (PI: Donald Bailey). This CEER, which was competitively renewed in 2013, is conducting an integrated set of research, policy, and education activities focused on new or heightened ELSI issues resulting from large-scale gene discovery and disclosure projects, and developing policy-relevant recommendations that will address translation to practice.

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Center for ELSI of Psychiatric, Neurologic & Behavioral Genetics at Columbia University Medical Center

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Research
Faculty
Publications

Paul Appelbaum, M.D., $5.2 million (FY 2013-2017)

The Center for ELSI of Psychiatric, Neurologic & Behavioral Genetics at Columbia University Medical Center is a scale-up of the Columbia University Exploratory Center Grant (see below). This CEER is exploring the impact of Psychiatric, Neurologic & Behavioral genetic information at individual, familiar and societal levels, considering its effects on stigma and self-image,

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University of Pennsylvania Center for the Integration of Genetic Healthcare Technology (Penn CIGHT)

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Research
Faculty
Publications

Reed Pyeritz, M.D., Ph.D., $ 5.3 million (FY 2007-2013)

The University of Pennsylvania Center for the Integration of Genetic Healthcare Technology (Penn CIGHT) is focused on the implications of the communication and use of potentially uncertain genetic information. Penn CIGHT develops tools that will help consumers, professionals, policy makers and insurers understand and cope with the certainty or uncertainty of results from genetic technologies.

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Exploratory Centers

Johns Hopkins University
Kaiser Permanente Division of Research and University of California, San Francisco
University of Utah
Columbia University University
Oregon Health Sciences University (OHSU)
Harvard University
Howard University

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Last Updated: January 27, 2014