Ethics of Identifying Race in the New Genetics

This ethnographic study examines the social and ethical implications of the use of categories of race and ethnicity in human genome research. The specific goals of the proposed research are: 1) to trace the history of public discourse on categories of race and ethnicity within biomedicine as it has contributed to the design of current genetic research; 2) to identify the sociopolitical stakes in discovering difference between groups identified as racial and/or ethnic in the search for single nucleotide polymorphisms (SNPs); 3) to critically examine the racial categorization of cell repositories and the use of human variation panels in genetic research; 4) to analyze the meaning of 'community' in current efforts to include racially and ethnically identified populations in the discourse surrounding genomic research and technology; and 5) to discover the ethical implications of the deployment of race and ethnicity in genomics research and to identify culturally appropriate mechanisms in protecting both individuals and communities from potential research related harms. This study will utilize anthropological methods of participant observation, semi-structured interview, survey administration and archival research.