CONCEPTS OF RACE & ETHNICITY IN GENETICS RESEARCH

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(Applicant's Abstract): The proposed training and research plan will give Dr. Hunt the knowledge and skills required to examine and constructively address the ways biomedicine views and represents ethnic and racial minority groups in medical research and intervention efforts, particularly focusing on genetics research and practice. This will enable her to contribute to the establishment of criteria and policies which assure that conceptual and methodological rigor underlie the design, interpretation and application of research on racial and ethnic differences in disease distribution and health behaviors. A national group of prominent experts in research ethics, and the ethics of genetics research and practice, will act as mentors and advisors. The comprehensive training will include attending national workshops and conferences, attending courses and seminars offered at ethics centers and carrying out a set of carefully supervised directed readings. In addition to studying research ethics, in order to assure an adequate knowledge base to conduct studies on genetic research, Dr. Hunt will also complete some courses and readings in medical genetics and statistics. Dr. Hunt will carry out research examining how genetic scientists and clinicians integrate concepts of race and ethnicity into their work. While in recent years there has been increasing interest in understanding the racial and ethnic distribution of genetic characteristics and genetic diseases, the basis of the definition and classification of racial and ethnic groups and the principles for interpreting and responding to observed differences have not been well articulated. Using a combined qualitative and quantitative approach, the proposed research will explore how race and ethnicity are defined and categorized; how implicit social constructs about racial and ethnic differences may be affecting these concepts and practices; and ways that unexamined constructs of racial and ethnic difference may influence how genetic knowledge is interpreted and applied. The specific aims are to: 1) Identify the perceptions and expectations of genetic scientists and clinicians regarding the importance of race and ethnicity to their work. 2) Describe how race and ethnicity are understood and how classifications are made by genetic scientists and clinicians in their research and practice. 3) Explore how research findings and clinical experiences regarding the relevance of race and ethnicity are interpreted and applied by genetic scientists and clinicians.