The National Human Genome Research Institute (NHGRI) wants to ensure that all populations benefit from the advances of genomics research, and have the opportunity to participate in various ways, such as becoming research scientists, research participants and policy makers. It is important for everyone to be informed about genomics research and to understand the ethical, legal and social implications resulting from genetics and genomics research.
Genomics research is shaping the future of medicine. For these advances of this research to benefit everyone more equally and improve health equity, it is important that the diversity of the study participants reflect the diversity of the population. It is also necessary to understand ethical, legal and social issues including utilization of genomic information, access to genomic services, and how genomics is perceived by different communities.
NHGRI is committed to improving health disparities through new and ongoing efforts across the Institute. There are multiple efforts at the intramural, extramural, and policy levels aimed at ensuring genomics benefits everyone.
For example, the Clinical Sequencing Exploratory Research (CSER) program is an effort of NHGRI's Division of Genomic Medicine and Division of Genomics and Society, in conjunction with the National Cancer Institute, to support research into the adoption and application of genomic sequencing in clinical care. The program focuses on the development and dissemination of best practices, as well as the ethical, legal, and psychosocial implications of bringing genomic data into clinical decision-making.
CSER recently issued a continuation of the program (CSER2) including a U01 research project focused on Clinical Sites with Enhanced Diversity. The program aims to recruit a minimum of 60 percent of patients who come from racial or ethnic minority populations, underserved populations, or populations who experience poorer medical outcomes.
Last Updated: December 7, 2016