"What are they going to do with the information?" Latino/Latina and African American perspectives on the Human Genome Project

Abstract

New developments in genetic science raise questions regarding their application and implications. Dialogue about these questions has not often included the perspectives of the general population and, in particular, the voices of labeled racial or ethnic groups. In this article, the authors present results from an analysis of data from focus group discussions that engaged African Americans and Latinos/Latinas in a discussion of genetic research and technology. In particular, the authors focus on questions of inequality that arose in those focus groups and their implications for public health professionals interested in addressing pervasive racial disparities in health. In addition, they present strategies for achieving a more equitable distribution of risks and benefits from genetic research and technology suggested by participants in these focus groups.