Genomic testing holds great promise for precision medicine, yet one problem remains: lack of representation in the subject pool of genomic studies and products. People of European descent dominate most of these studies, while other populations are grossly underrepresented. Only a quarter of the world’s population is of Caucasian origin—the majority is Asian, followed by African and Latino. Failure to include racially and ethnically diverse populations in genomics research hinders actual progress in understanding human health and disease. For instance, a narrow pool of study subjects puts researchers at risk of missing genetic variants that happen to be rare in Whites, thus losing important diagnostic and therapeutic information. Underrepresentation also exacerbates existing health disparities, since lack of access to these tests, due to economic and geographic factors, hinders patients in underrepresented groups from receiving proper care.
Countries and biotech companies are starting to acknowledge this problem. Databases are being created, such as the Human Heredity and Health in Africa Initiative, the Hispanic Community Health Study/Study of Latinos, and the U.S. National Institutes of Health’s All of Us Research Program. The latter plans to recruit 1 million diverse individuals, half of whom will be of non-European ancestry. New recruiting efforts aim to hire scientists who look like the individuals they hope to include, and difficult discussions about medical mistreatment of minority groups—such as in the Tuskegee Syphilis Experiment—are taking place in an effort to cultivate trust, equity, and collaboration with populations that have been left out of these conversations for too long.
Our expert speaker, Tshaka Cunningham, chief science officer at TruGenomix and executive director of the Faith Based Genetic Research Institute, will:
- Discuss how genetics companies are trying to address the lack of diversity in genomic studies
- Highlight various inclusion strategies such as the “honest broker” philosophy, messaging, and compensation
- Provide examples of genomic studies that are successfully including more diverse subjects
- Explain how polygenic tests are more robust through greater subject inclusion
- Answer your questions live during the broadcast.
This webinar will last for approximately 60 minutes.