- While genetic testing has increased the ability to prevent, diagnose and treat diseases, minorities often lack access to these technologies, a group of authors write in Health Affairs' August issue.
- Treatments that are based on research on whites with European ancestry may not benefit other population groups, according to the authors.
- The authors point to the APOLI gene, which is linked to kidney disease in African Americans, saying wider testing for it could improve outcomes.
Genetic testing has been on the rise but, according to the authors, physicians are less likely to provide genetic testing for minorities. For example, among women at risk for breast cancer, just 28% of African Americans and a smaller number of Hispanics received genetic tests and counseling. Inversely, white women were more likely to request genetic counseling for breast cancer than women in minorities.
“Failing to adequately fund minority-focused genetic research runs the risk of widening existing disparities on an ever-increasing scale,” the authors warn.
With African Americans four times more likely to get end-stage renal disease than European Americans, research to understand the molecular mechanisms of APOL1 genotypes is needed, they said.
In 2015, a study led by Dr. Amelie Ramirez of national cancer research network Redes en Accion, which evaluated four minorities' attitudes about breast cancer genetic testing, found that African American women perceived more risks and limitations to testing than other groups. Cost was a large deterrent, Ramirez said.
His findings suggest providers should provide racial and ethnic minorities with a genetic counseling program that has integrated their different cultural values and beliefs.
To reverse the disparities gap, the Health Affairs authors recommend four things:
- Minority-focused research to identify genetic variants with in racial, ethnic and socioeconomic minority groups, and funding to support that research;
- Community-based participatory research;
- Research on the interaction of genetic risk and a person’s environment; and
- Better education of providers and all patients about the benefits, risks and limitations of genetic testing.