PROJECT NARRATIVE We will undertake epidemiological, historical and mixed-methods analysis of nearly 30,000 eugenic sterilization requests processed by three U.S. states: California, North Carolina, and Iowa, between 1919 and 1974. Working with de-identified datasets and using methods we developed during the R21 phase of this project, we will estimate and compare population-based rates of sterilization according to gender, age, ethnicity, nationality, diagnosis, state, and time period.
Charmaine Royal is Director of the Center on Genomics, Race, Identity, Difference (GRID) at the Social Science Research Institute, Duke University. GRID brings together collaborators and partners to explore issues at the intersection of genetics and race and other descent-related identities such as ancestry, ethnicity, tribe, and geographic and national classifications.
The Harvard/MGH Center on Genomics, Vulnerable Populations, and Health Disparities is a joint research center between Harvard University and Massachusetts General Hospital that conducts studies at the intersection of genomics, epidemiology, and health disparities research, with a specific focus on the diseases prevalent in populations currently underserved in the healthcare system.
The Risk Evaluation and Education for Alzheimer's Disease (REVEAL) Study is an ongoing, multi-site research project that is designed to evaluate the psychological and behavioral impact of genetic risk assessment with disclosure of APOE, a susceptibility polymorphism for Alzheimer's disease. In the first funding cycle of the REVEAL Study, we developed a novel risk assessment methodology and conducted a randomized clinical trial in which 162 first degree relatives of patients with AD received genetic risk assessment with or without APOE disclosure.
New information from the mapping of the human genome has the potential to significantly alter the way we view and react to individuals and groups. At the same time, our reactions to this new information will be shaped by the manner in which it is presented to and understood by the public and by existing attitudes about the groups to whom the information applies. The proposed research examines the impact of human genomic research on existing forms of stigma.
Research is currently underway that seeks to deepen our understanding of the role of genetic factors in substance dependence and response to treatment. In order for the potential benefits of emerging research to be realized, it is crucial to begin understanding how members of different racial/ethnic groups comprehend, interpret and respond to information about the role of genetics in addiction and treatment response, and in particular to reported racial differences in the frequency of alleles hypothesized to increase susceptibility to addiction or affect response to treatment.
Despite significant efforts, African Americans continue to experience excess rates of morbidity and mortality from all forms of cancer relative to individuals from other ethnic and racial groups. Research is now being conducted to the molecular basis of cancer through genetic-based studies and to translate this information into strategies for cancer detection, prevention, and treatment. African American reluctance to participate in cancer genetics research will significantly limit efforts to apply these approaches to address racial disparities in cancer outcomes.