Rural Mexican-Americans’ perceptions of family health history, genetics, and disease risk: implications for disparities-focused research dissemination

Abstract

Disseminating the results of transdisciplinary health disparities research will increasingly involve discussing family health history and/or genetic information with study participants and their communities. Often, individuals' familiarity and comfort with these topics will be unclear. To inform the dissemination activities of a Center for Population Health and Health Disparities (CPHHD) studying multilevel determinants of breast cancer disparities in Latinas, we talked with Spanish-speaking Mexican-Americans from a rural agricultural community about family health history, genetics, and disease risk. We found that participants had limited genetic literacy but were familiar with some concepts related to family health history. Participants emphasized the role of individual behavior in shaping health and expressed a strong desire for health-related information. This included genetic information about future disease risk, which participants were previously unaware of but thought could be useful for disease prevention. These findings suggest that for research dissemination to facilitate health promotion, gaps in knowledge, particularly genetic knowledge, will need to be overcome. Outreach to underserved Latino communities should take advantage of this existing knowledge of family health history and strong desire for health information, but also take care to not overstate the significance of unreplicated or low-penetrance genetic associations.

Using Genetic Technologies To Reduce, Rather Than Widen, Health Disparities

“…14 Within the Centers for Population Health and Health Disparities, investigators from the Partnership to Understand and Eliminate Disparate Outcomes (PUEDO) at the Fred Hutchinson Cancer Research Center are partnering with Mexican American women to explore the women’s ancestry and breast cancer and the role of genetic testing in reducing breast cancer disparities between Mexican American and white women. 15 …”

“…15 In a linked project, investigators will examine the ancestral heterogeneity of study participants (with European, American Indian, and African ancestry) and test for relationships between the genetic markers that reflect ancestral origins and disease. Such research will inform individualized assessment of risk and facilitate health care that is more appropriate than current care.…”

“…Community-based participatory research programs and interventions have been shown to be effective and sustainable and to create partnerships with community members that offer opportunities to promote genetic literacy. 47 The PUEDO study, 15 for instance, used a community-based research approach.…”

Engaging Study Participants in Research Dissemination at a Center for Population Health and Health Disparities

“…For example, we struggled with how to disseminate the different types of results that PUEDO may produce, which range from novel genetic associations to statistical assessments of intervention efficacy and cost effectiveness, in a way that is transparent, but also contextualized within the larger evidence base, so as to not contribute to hype or misinformation. 21,22 We relied on our CAB’s input and expertise to address this issue— they, along with the FHCRC Institutional Review Board, will review all dissemination materials. Returning to participants for their input, as our CAB originally suggested, would be ideal, but in some ways scientifically compromised if dissemination materials are based on well-validated approaches and tested theories.…”

Genetic counseling among minority populations in the era of precision medicine

“…This is particularly true for immigrant populations who may be from countries where education is not a right, but a privilege for those who can afford it. For example, Malen, Knerr, Delgado, Fullerton, and Thompson () found that none of the participants in their study of rural Mexican‐Americans could describe what “genetics” meant to them in their own words. In a study of low‐income Chinese immigrants, there was skepticism regarding genetic causes of cancer, with much stronger beliefs about environmental causes (Cheng et al, ).…”