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Genetic Research: Race/Ethinicity and Disease

“A Paradox of Genetic Research: Race, Ethnicity & Disease,” was funded by NHGRI R01 (HG002517-01A1) 2003-2006. It aims to understand how and why investigators link genetic diseases to named populations and how community organizations respond to genetic research and disease linkages. The project recognizes that although researchers may reject the idea of a genetic basis for racial or ethnic identity, they often use these identifiers in their research design, sample selection, data collection and representation of results. So too, community organizations, both those established to combat a disease and those established to serve the social and health needs of a racial or ethnic group, may endorse genetic research and encourage screening efforts while others may not. The project’s major objective is to chart the relationship between genetic researchers and ethnic and racial groups in order to help move genetic research forward.

The project seeks to educate investigators about the issues of importance to racial and ethnic groups and to inform racial and ethnic groups about the methods and goals of researchers. The project has developed three online documents. These documents are informed by interviews that the project conducted with genetic researchers and community organizations, supplemented by archival research.

  • An Online Curriculum for Genetic Researchers: The syllabus offers a comprehensive overview of the issues that scientists encounter in conducting research with racial and ethnic groups. Subjects include: 1) recruitment of participants; 2) the importance of community consultation and informed consent; 3) the benefits and risks of genetic research; 4) economic and legal concerns; 5) intellectual property rights.

  • An Online Handbook for Community Organizations: The booklet is designed to assist community organizations in developing and maintaining relationships with genetic researchers. It provides information about the methods, goals, risks, and benefits of genetic research and includes information relevant to participation in studies.

  • A Guided Plan for Holding a Series of Forums Between Genetic Researchers and Community Organizations: The plan outlines forums designed to stimulate dialogue between genetic researchers and community organizations on the benefits and risks of genetic research and strategies for consultation and collaboration between researchers and community organizations.

The project is also preparing scholarly articles. Its first article is Sherry Brandt-Rauf, JD, MPhil, Victoria Raveis, PhD, Nathan Drummond, BA, Jill Conte, BA, Sheila Rothman, PhD. “Ashkenazi Jews and Breast Cancer: The Consequences of Linking Ethnic Identity to Genetic Disease,” American Journal of Public Health November 2006. Read the Press Release.

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