Informed Consent & Concepts of Race in Genetic Research

To advance understanding of the ethical dimensions of genetic research for diverse populations this project will address questions that take into account concerns of the individual, scientific institutions, and the broader community. Informed consent provides the focus of the ethical exchange between investigators and study participants. This social interaction will serve as the context for exploring ethical issues associated with the implementation of collaborative international genetic research. Broader concerns of society will be addressed by examining how genetic identity and race are conceptualized in both the lay and professional communities. The proposed research builds on an extensive infrastructure of genetic epidemiological field studies being carried out in metropolitan Chicago and Nigeria. The goals of this project are to: 1) define existing processes for obtaining informed consent in genetic research on hypertension and breast cancer currently being conducted in metropolitan Chicago and Nigeria; 2) identify mechanisms to ensure culturally appropriate informed consent that are maximally informative and protective for all research participants; 3) examine the ways in which the cataloguing of new DNA polymorphisms interact with and perpetuate current concepts of race, ethnicity and culture; and 4) identify mechanisms for appropriate use of the concepts of race, ethnicity and culture in genetic epidemiological research in order to foster the development of effective clinical intervention and access to health care for all ethnic populations.