Ashkenazi Jews: Overburdened and overexposed?

Abstract

Utilizing a closed-ended survey and three focus groups drawn from one Midwest city, this study examined attitudes of Ashkenazi Jews toward involvement in genetic research. The research is framed within an analysis of the extent of Ashkenazi involvement in research; factors that make this group an attractive object of genetic study; cultural, historical, and religious factors within the group that drive people's attitudes toward being subjects of genetic research; community consent as a possible response to concerns within this population about research participation. Although some participants had concerns about discrimination and privacy, there was a clear sense of the potential benefits of genetic research and testing. The majority of respondents did not agree that genetic research could hurt the image of the Jewish community. Subjects expressed consensus that decisions about participation in research should be made by individuals, and not by the community. In conclusion, Ashkenazi Jews in this study did not feel overstudied and overexposed. They were not interested in community consultation or consent for genetic research on their ethnic group. © 2010 Taylor & Francis.