Workshop on the Use of Race and Ethnicity in Genomics and Biomedical Research
The National Human Genome Research Institute (NHGRI) and the National Institute of Minority Health and Health Disparities (NIMHD) convened a workshop to discuss the use of race and ethnicity data in genomics, biomedical, and clinical research, and their influence on minority health and health disparities.
The workshop's objective was to explore how research participants' diverse backgrounds and experiences can be described in ways that are scientifically and socially meaningful. Participants included genomic, clinical, and social science researchers, as well as NIH staff, government stakeholders, and other experts.
The two-day workshop consisted of presentations and discussions during consecutive sessions, each focused on a particular aspect of race and ethnicity in research. Presenters were asked to discuss their own scholarship around the sessions’ theme, and give examples that help illustrate their perspective. The main topics of these sessions included the appropriate use of SIRE and AIMs in various research contexts, the impact to minority health research and health disparities research, the reporting of genetic variation including in non-research contexts such as clinical and direct-to-consumer testing, collaboration between genomics and social sciences, utilizing electronic health records (EHRs) in personalized medicine and public health research, and potential roles for the National Academy of Sciences (NAS) and scientific journals in exploring and implementing new research and reporting frameworks.
The workshop generated recommendations for the appropriate use of race, ethnicity, and other population descriptors in scientific research and reports.