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.
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Acknowledgments
This project was supported through the National Cancer Institute under grant P50CA148143. F. Delgado was also supported by the American College of Medical Genetics Foundation Summer Scholars Program under the mentorship of Fuki Hisama. We would like to thank the staff at the Center for Community Health Promotion, particularly Nathanael Marchello, for their contribution to this work as well as the study's participants.
Compliance with ethics guidelines
All human subjects research was approved by the Fred Hutchinson Cancer Center Research Center’s IRB and is in full compliance with the current laws that protect human subjects in the USA.
Conflict of interest
The authors have no conflicts of interest to declare.
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Malen, R., Knerr, S., Delgado, F. et al. Rural Mexican-Americans’ perceptions of family health history, genetics, and disease risk: implications for disparities-focused research dissemination. J Community Genet 7, 91–96 (2016). https://doi.org/10.1007/s12687-015-0245-1
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DOI: https://doi.org/10.1007/s12687-015-0245-1