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NIH May 5, 2003 | R01
A Paradox of Genetic Research: Race, Ethnicity & Disease
Institution: COLUMBIA UNIVERSITY HEALTH SCIENCES
FOA Number: N/A
Abstract
The goal of this revised proposal is to illuminate the relationships between genetic researchers and racial/ethnic groups. Specifically, it seeks to understand how and why investigators link genetic diseases to named populations; how community organizations respond to genetic research and disease linkages; and to stimulate a dialogue between genetic researchers and community organizations on social risk, community consultation and informed consent. Four diseases that have been closely linked to named populations will be the main focus: Tay-Sachs disease, sickle cell anemia, hereditary prostate cancer, and BRCA-related hereditary breast cancer. The products of the project?s comparative approach will include materials that inform both researchers and community organizations about the implications for each of working together and of using racial and ethnic variables in genetic research.
FUNDING AGENCY:
Funder:
NIHInstitute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTEFunding Type:
R01Project Number:
R01HG002517Start Date:
May 5, 2003End Date:
Apr 30, 2006PROJECT TERMS:
behavioral /social science research tag, Clinical Research, community, computer data analysis, data collection methodology /evaluation, Ethics, Ethnic group, Experimental Designs, Gene Expression, genetic disorder, genetic susceptibility, health /scientific organization, health care referral /consultation, health disparity, human subject, Information Dissemination, Informed Consent, Interview, linkage mapping, medical outreach /case finding, social perception, social psychology