While genetic technology has greatly advanced knowledge about disease and improved prospects for personalized medicine, minority groups tend to be underrepresented in genetic databases and may not be well served by the prevailing research, according to an article in Health Affairs.
Minorities have higher rates of breast cancer and kidney disease, the article points out, highlighting the need for research specific to underrepresented populations.
The “normal” genetic sequence of the BRCA1 and BRCA2 genes, which are linked to breast cancer, was determined based on studies of women of European descent, and identified a small, well-defined group of mutations. That “normal,” however, might not apply to women of other racial or ethnic groups.
In addition, African-Americans have nearly four times the risk of end-stage renal disease as European Americans, a finding that can’t be explained by factors such as hypertension, diabetes and socioeconomic status.
The researchers call for:
- Minority-focused genetic research: Current genetic databases don’t fully explain genetic variability of complex diseases, such as why African-Americans may have more aggressive tumors, or preventative actions they might take, such as breast-feeding.
- Community-based participatory research: This process to involve study participants tends to better engage the community. The Fred Hutchinson Cancer Research Center in Seattle has used it to improve genetic literacy among rural Mexican-American women and test for relationships between ancestral genetic markers and breast cancer.
- Research on the relationships between genes and environment: This would include how environment promotes disease as well as how potential changes, such as in diet or lifestyle, might lower the risk.
- Education: Providers, especially those in community health centers, as well as patients need to better understand the risks, benefits and limitations of genetic research for minority populations.
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