Knowledge of the genetic code and the capacity for large-scale genotyping has fundamentally altered the character of biomedical research. To advance our understanding of the ethical dimensions of genetic research for diverse populations we 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. We will use this social interaction 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. These studies are part of the NIH-funded Chronic Disease Network (CDN) and include investigations of the genetic and epidemiological determinants of hypertension and breast cancer. Currently, the process of informed consent to participate in international genetics research is not adequately understood. Simply transferring standard methods of obtaining consent from industrialized societies to developing countries is wholly inadequate, but no reasonable alternatives have yet been developed. In addition, the manner in which findings are used, and the representation of communities that are being studied to scientific and lay audiences has received very little attention in biomedical research. A reformulation of the concept of race to accommodate information on sequence variation is urgently needed. 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.
| Marshall, Patricia A; Adebamowo, Clement A; Adeyemo, Adebowale A et al. (2014) Voluntary participation and comprehension of informed consent in a genetic epidemiological study of breast cancer in Nigeria. BMC Med Ethics 15:38 |
| Marshall, Patricia A (2008) ""Cultural competence"" and informed consent in international health research. Camb Q Healthc Ethics 17:206-15 |
| Marshall, Patricia A; Adebamowo, Clement A; Adeyemo, Adebowale A et al. (2006) Voluntary participation and informed consent to international genetic research. Am J Public Health 96:1989-95 |
| Sankar, Pamela; Cho, Mildred K; Condit, Celeste M et al. (2004) Genetic research and health disparities. JAMA 291:2985-9 |
| Marshall, P A; Rotimi, C (2001) Ethical challenges in community-based research. Am J Med Sci 322:259-63 |
| Marshall, P A; Rotimi, C (2001) Ethical challenges in community-based research. Am J Med Sci 322:241-5 |
