Lisa G Rosas1, Catherine Nasrallah2, Van Ta Park3, Jan J Vasquez4, Ysabel Duron5, Owen Garrick6, Riccesha Hattin6, Mildred Cho7, Sean P David8, Jill Evans9, Rhonda McClinton-Brown10, Christopher Martin11. 1. Department of Epidemiology and Population Health, Stanford University School of Medicine, Palo Alto, CA. 2. Palo Alto Medical Foundation, Palo Alto, CA. 3. Community Health Systems, University of California at San Francisco, CA. 4. Office of Community Engagement, Stanford University, Palo Alto, CA. 5. Latino Cancer Institute, San Jose, CA. 6. Bridge Clinical Research, Oakland, CA. 7. Department of Pediatrics, Stanford University, Stanford, CA. 8. Department of Family Medicine, University of Chicago, Evanston, IL. 9. Center for Population Health Sciences, Stanford University, Palo Alto, CA. 10. Healthy Communities Branch, County of Santa Clara Public Health Department, San Jose, CA. 11. Stanford Precision Health for Ethnic and Racial Equity, Stanford University, Palo Alto, CA.
Abstract
Background: In order for precision health to address health disparities, engagement of diverse racial/ethnic minority communities and the physicians that serve them is critical. Methods: A community-based participatory research approach with mixed methods was employed to gain a deeper understanding of precision health research and practice among American Indian, African American, Latino, Chinese, and Vietnamese groups and physicians that serve these communities. A survey assessed demographics and opinions of precision health, genetic testing, and precision health research. Focus groups (n=12) with each racial/ethnic minority group and physicians further explored attitudes about these topics. Results: One hundred community members (American Indian [n=17], African American [n=13], Chinese [n=17], Latino [n=27], and Vietnamese [n=26]) and 14 physicians completed the survey and participated in the focus groups. Familiarity with precision health was low among community members and high among physicians. Most groups were enthusiastic about the approach, especially if it considered influences on health in addition to genes (eg, environmental, behavioral, social factors). Significant concerns were expressed by African American and American Indian participants about precision health practice and research based on past abuses in biomedical research. In addition, physician and community members shared concerns such as security and confidentiality of genetic information, cost and affordability of genetic tests and precision medicine, discrimination and disparities, distrust of medical and research and pharmaceutical institutions, language barriers, and physician's specialty. Conclusions: Engagement of racial/ethnic minority communities and the providers who serve them is important for advancing a precision health approach to addressing health disparities.
Background: In order for precision health to address health disparities, engagement of diverse racial/ethnic minority communities and the physicians that serve them is critical. Methods: A community-based participatory research approach with mixed methods was employed to gain a deeper understanding of precision health research and practice among American Indian, African American, Latino, Chinese, and Vietnamese groups and physicians that serve these communities. A survey assessed demographics and opinions of precision health, genetic testing, and precision health research. Focus groups (n=12) with each racial/ethnic minority group and physicians further explored attitudes about these topics. Results: One hundred community members (American Indian [n=17], African American [n=13], Chinese [n=17], Latino [n=27], and Vietnamese [n=26]) and 14 physicians completed the survey and participated in the focus groups. Familiarity with precision health was low among community members and high among physicians. Most groups were enthusiastic about the approach, especially if it considered influences on health in addition to genes (eg, environmental, behavioral, social factors). Significant concerns were expressed by African American and American Indian participants about precision health practice and research based on past abuses in biomedical research. In addition, physician and community members shared concerns such as security and confidentiality of genetic information, cost and affordability of genetic tests and precision medicine, discrimination and disparities, distrust of medical and research and pharmaceutical institutions, language barriers, and physician's specialty. Conclusions: Engagement of racial/ethnic minority communities and the providers who serve them is important for advancing a precision health approach to addressing health disparities.
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