Perspectives on Precision Health Among Racial/Ethnic Minority Communities and the Physicians That Serve Them

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.Ethn Dis. 2020;30(Suppl 1):137-148; doi:10.18865/ed.30.S1.137

Integrating Genomic Screening into Primary Care: Provider Experiences Caring for Latino Patients at a Community-Based Health Center

“… 26 , 27 Addressing these and other health inequities in genetic medicine requires that we consider how best to make the potential benefits of precision medicine available to under-resourced communities. 11 , 28 , 29 This sentiment was evident in our interactions with PCPs, all of whom expressed a strong interest in advancing community-based health by promoting genomic research, despite limited evidence of clinical utility in comparable settings and full awareness of the many challenges associated with the clinical management of patients who received a medically actionable result. A consistent sentiment among PCPs was enthusiasm for this research in genomic screening to learn more and consider how precision medicine might benefit their patients in the future.…”

“… 9 , 10 Additionally, patients from lower-resource communities, and the physicians who care for them, are concerned about the affordability of genomic medicine and its potential to widen existing health disparities. 11 - 13 …”

Motivation to Participate in Precision Health Research and Acceptability of Texting as a Recruitment and Intervention Strategy Among Vietnamese Americans: Qualitative Study

“…Once the participants were more informed about precision health (through the facilitator’s introduction of the topics), they became more receptive and expressed positive attitudes toward participating in precision health research and provided input on how texting could be used to recruit and engage Vietnamese Americans in research. Although there is limited prior research on this topic, there was 1 qualitative study (where the lead author of this paper was a collaborator) that had also employed focus groups among American Indian, African American, Latino, Chinese, and Vietnamese groups and found similar findings (ie, limited prior knowledge about precision health) [ 19 ]. Moreover, the same study reported that all Latino, Chinese, Vietnamese, and some African American participants had positive attitudes toward precision health [ 19 ].…”

“…Although there is limited prior research on this topic, there was 1 qualitative study (where the lead author of this paper was a collaborator) that had also employed focus groups among American Indian, African American, Latino, Chinese, and Vietnamese groups and found similar findings (ie, limited prior knowledge about precision health) [ 19 ]. Moreover, the same study reported that all Latino, Chinese, Vietnamese, and some African American participants had positive attitudes toward precision health [ 19 ].…”

“…Participants were asked to indicate to what extent they agreed with the statements in the survey on a 5-point Likert scale from strongly disagree ( 1 ) to strongly agree ( 5 ). These items, which were drawn from previous precision health research with diverse racial/ethnic populations including Vietnamese Americans [ 18 , 19 ], included (1) genetics affect health; (2) the use of personal genetic information in health care is beneficial to patients; (3) I feel comfortable talking to my doctors about genetic testing; (4) the use of genetic tests could lead to discrimination; (5) if available, I would like to undergo genetic testing to find out if I am at risk of certain diseases (eg, cancer and diabetes); (6) if available, I would like to undergo genetic testing to find out if a certain drug (eg, high blood pressure medication) or treatment would work for my conditions; and (7) if available, I would like to participate in research about using genetics for disease prevention and treatment.…”