The completion of the Human Genome Project occurred at a time of increasing public attention to health disparities. In 2004, Sankar and colleagues 1 suggested that this coincidental timing resulted in an inappropriate emphasis on the contribution of genomics to health disparities, conflating racial patterns of disease with genetic ancestry, and distracting attention from the large and compelling body of scientific evidence pointing to social determinants of health disparities. 2 For example, genomic research has emphasized discovery of genetic contributors to diabetes risk, but the recent increase in the prevalence of obesity and type 2 diabetes, which disproportionately affects minority populations, cannot be attributed to genetic changes and rather reflects social forces affecting diet, food access, and patterns in physical activity. The introduction of new genomic health technologies could also exacerbate disparities in access to high-quality health care, if specific genomic testing improved health and was only available to those who were affluent. Nonetheless, the claim persists that genomic research can reduce health disparities-if only participation by minority populations in genomic research could be increased. 3 The source of this claim is an idiosyncratic usage of the term health disparities that may result in missed opportunities for the nation's health research agenda. Health disparities are generally understood to refer to systematic differences in health effects resulting from social disadvantage, but the term is often used in genomics to refer to differing health outcomes associated with population genetic variation. This usage arguably stems from the US focus on the association of health disparities with race/ethnicity (vs socioeconomic status), together with a growing body of knowledge about population genetic variation. Compounding the problem is a tendency in the United States to conflate health disparities and health care disparities, perhaps based on the erroneous assumption that improved health care will resolve health disparities. 4 The misunderstanding about the causes of health disparities leads to confusion about fruitful lines of research and potential remedies.A causal association between social position and health is well established. 5 This association has been documented in both developed and developing countries and dates back to the earliest records, despite substantial change over time in the principal causes of disease. A broad array of health conditions across the lifespan follows a social gradient, wherein better health and longer lifespans track with increases in social advantage. This pattern holds whether measured by proxies of social class, such as education, income, and occupation, or by race/ethnicity. 5 In the United States, health disparities are significant and widening and have attracted
Background: Apolipoprotein A1 (APOL1) gene variants occurring in people of West African descent contribute to the greater burden of kidney disease among African Americans. These variants are associated with increased risk of nondiabetic nephropathy, more rapid progression of chronic kidney disease, and shorter survival of donor kidneys after transplantation. However, only a minority of people with APOL1-associated risk develops kidney disease and specific clinical measures to address APOL1-associated risk are lacking. Given these uncertainties, we sought to engage members of the African American public in discussions with other stakeholders about the appropriate use of APOL1 testing. Methods: Formative interviews with community members, researchers, and clinicians in Seattle WA, Nashville TN, and Jackson MS, provided baseline information about views toward APOL1 testing and informed the design of 3 community-based deliberations among African Americans. A national meeting held in March 2018 included 13 community members, 7 scientific advisors and 26 additional researchers, clinicians, bioethicists, patient advocates, and representatives from professional organizations and federal funding agencies. Using small break-out and plenary discussion, the group agreed on recommendations based on current knowledge about APOL1-associated risk. Results: Meeting outcomes included recommendations to develop educational materials about APOL1 for community members and clinicians; to offer APOL1 research results to participants; and on the use of APOL1testing in kidney transplant programs. The group recommended against the routine offer of APOL1 testing in clinical care. Areas of disagreement included whether kidney transplant programs should require APOL1 testing of prospective living donors or bar individuals with APOL1 risk from donating kidneys and whether testing should be available on request in routine clinical care. Conclusion: We recommend continued discussion among stakeholders and concerted efforts to ensure active and informed participation of members of the affected community to guide research on APOL1 and kidney disease.
The scientific and public health benefits of mandatory data-sharing mechanisms must be actively demonstrated. To this end, we manually reviewed 2724 data access requests approved between June 2007 and August 2010 through the U.S. National Center for Biotechnology Information (NCBI) database of genotypes and phenotypes (dbGaP). Our analysis demonstrates that dbGaP enables a wide range of secondary research by investigators from academic, governmental, and nonprofit and for-profit institutions in the United States and abroad. However, limitations in public reporting preclude the tracing of outcomes from secondary research to longer-term translational benefit.
American Indian and Alaska Native (AI/AN) communities harbor understandable mistrust of research. Outside researchers have historically controlled processes, promulgating conclusions and recommended policies with virtually no input from the communities studied. Reservation-based communities can apply sovereignty rights conferred by the federal government to change this research trajectory. Many tribes now require review and approval before allowing research activities to occur, in part through the development of regulatory codes and oversight measures. Tribal oversight ensures that research is directed toward questions of importance to the community and that results are returned in ways that optimize problem solving. Unfortunately, tribal governance protections do not always extend to AI/ANs residing in urban environments. Although they represent the majority of AI/ANs, urban Indians face an ongoing struggle for visibility and access to health care. It is against this backdrop that urban Indians suffer disproportionate health problems. Improved efforts to ensure responsible research with urban Indian populations requires attention to community engagement, research oversight, and capacity building. We consider strategies to offset these limitations and develop a foundation for responsible research with urban Indians.
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