The overall goal of the proposed research is to contribute to improved communication about race and ethnicity among genetics researchers and, as a result, between these researchers, professionals who are meant to apply the results of research on human genetic variation, and the public. Our primary aim is to clarify how and why researchers use race and ethnicity in forensic and medical genetic research, and what researchers think are appropriate generalizations and applications of their findings. A secondary aim is to familiarize graduate students from genetics and social science with the meanings and functions of race and ethnicity in different disciplines. Our research will include a national survey of medical and forensic genetic researchers, in-depth interviews, and a content analysis of genetic research articles published in peer reviewed medical and forensic genetic journals. Through short-term summer internships, we will involve an interdisciplinary group of graduate students in this research and facilitate among them understanding of multiple perspectives on the relationship of genetics with race and ethnicity. A belief that there exists a single correct definition or function of race and ethnicity in genetics research does not motivate the proposed study. Nor is the intent of this research to contribute to the debate over biological phenomenon associated with genetic variation. Rather, the motivation is to address the inconsistencies of terms used in genetic variation research in order to enhance scientific validity and generalizability, and to facilitate clear communication among scientists and with the public. If the debates continue without clarification on how to resolve them within the research community, there is a real danger that genetics and medical research generally will be slowed if the public perceives that science is contributing to discriminatory ends, even if that is not the scientist's intention.

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
Research Project (R01)
Project #
5R01HG003191-02
Application #
6920076
Study Section
Ethical, Legal, and Social Implications of Human Genetics (ELSI)
Program Officer
Mcewen, Jean
Project Start
2004-07-14
Project End
2007-06-30
Budget Start
2005-07-01
Budget End
2006-06-30
Support Year
2
Fiscal Year
2005
Total Cost
$268,865
Indirect Cost
Name
University of Pennsylvania
Department
Internal Medicine/Medicine
Type
Schools of Medicine
DUNS #
042250712
City
Philadelphia
State
PA
Country
United States
Zip Code
19104
Sankar, Pamela; Cho, Mildred K; Monahan, Keri et al. (2015) Reporting Race and Ethnicity in Genetics Research: Do Journal Recommendations or Resources Matter? Sci Eng Ethics 21:1353-66
Sankar, Pamela; Cho, Mildred K; Mountain, Joanna (2007) Race and ethnicity in genetic research. Am J Med Genet A 143A:961-70
Cho, Mildred K (2006) Racial and ethnic categories in biomedical research: there is no baby in the bathwater. J Law Med Ethics 34:497-9, 479
Rebbeck, Timothy R; Halbert, Chanita Hughes; Sankar, Pamela (2006) Genetics, epidemiology, and cancer disparities: is it black and white? J Clin Oncol 24:2164-9
Kahn, Jonathan; Sankar, Pamela (2006) Being specific about race-specific medicine. Health Aff (Millwood) 25:w375-7
Sankar, Pamela; Kahn, Jonathan (2005) BiDil: race medicine or race marketing? Health Aff (Millwood) Suppl Web Exclu:W5-455-63
Rebbeck, Timothy R; Sankar, Pamela (2005) Ethnicity, ancestry, and race in molecular epidemiologic research. Cancer Epidemiol Biomarkers Prev 14:2467-71
Cho, Mildred K; Sankar, Pamela (2004) Forensic genetics and ethical, legal and social implications beyond the clinic. Nat Genet 36:S8-12