Abstract
A clear awareness of a patient’s knowledge, values, and perspectives is an important component of effective genetic counseling. Advances in precision medicine, however, have outpaced our understanding of patient perceptions of this new approach. Patient views may differ across the three domains of precision medicine (genetics, behavioral, and environmental determinants of health), ethnic/racial groups, and health literacy levels. This study describes and compares group differences in familiarity, perceptions, and preferences for precision medicine in a diverse sample. Between 2016 and 2017, 252 participants completed a 10–15-min survey in three primary care clinics in Florida and Tennessee. The final sample was 42.5% African American/Black, 25.8% Hispanic/Latino, 25.0% White, and 6.7% other ethnicity/race. Less than a quarter of participants reported being familiar with the term “precision medicine,” but were more familiar with basic genetic terms. Participants with higher health literacy reported greater familiarity with terms (p ≤ .003). African Americans/Black participants were more likely to identify ethnicity/race and discrimination as influencing their health (p ≤ .004). When deciding to get a genetic test, individuals across ethnic/racial groups shared similar considerations. Those with higher health literacy, however, gave significantly greater importance to provider trust (p ≤ .008). Given the recent emergence of precision medicine, at present there may be limited differences in patient perceptions across ethnic/racial groups. Culturally sensitive efforts, tailored to health literacy level, may aid equitable precision medicine uptake.
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Acknowledgements
We would like to acknowledge the contributions of Niral Patel and John Salerno in coordinating recruitment and data collection efforts for this study. Additionally, we would like to thank Rui Wang, Alexandra Fernandez, and Stephanie Berra for their assistance with data collection. Finally, we would like to thank the members of the Precision Medicine and Health Disparities Collaborative Ethics Advisory Board for their valuable input on this paper. Research reported in this publication was conducted under the auspices of the Precision Medicine and Health Disparities Collaborative (Vanderbilt-Meharry-Miami Center of Excellence in Precision Medicine and Population Health), supported by NIMHD and NHGRI of the National Institutes of Health under award number U54MD010722. Additional support was provided by the Vanderbilt University Medical Center Institute for Clinical and Translational Research (RR024975). The content is solely the responsibility of the authors and does not necessarily represent the official views of NIMHD or the National Institutes of Health.
Authorship Contributions
Jessica R. Williams contributed to the research design, data analysis, interpretation of data, and writing of the first draft of the manuscript. Vivian M. Yeh was responsible for data acquisition, analysis, and interpretation and contributed to the writing of the manuscript. Marino A. Bruce contributed to the research design, interpretation of data, and critical review and revision of the manuscript. Carolyn Szetela contributed to the research design, interpretation of data, and critical review and revision of the manuscript. Flora Ukoli contributed to data acquisition and critical review and revision of the manuscript. Consuelo H. Wilkins contributed to the research design, data interpretation, and critical review and revision of the manuscript. Sunil Kripalani contributed to the research design, data analysis, interpretation of data, and critical review and revision of the manuscript. All authors read and approved the final manuscript and agreed to be accountable for all aspects of the work.
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Authors Jessica R. Williams, Vivian M. Yeh, Marino A. Bruce, Carolyn Szetela, Flora Ukoli, Consuelo H. Wilkins, and Sunil Kripalani declare that they have no conflict of interest.
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All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all participants for being included in the study.
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No animal studies were carried out by the authors for this article.
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Williams, J.R., Yeh, V.M., Bruce, M.A. et al. Precision Medicine: Familiarity, Perceived Health Drivers, and Genetic Testing Considerations Across Health Literacy Levels in a Diverse Sample. J Genet Counsel (2018). https://doi.org/10.1007/s10897-018-0291-z
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DOI: https://doi.org/10.1007/s10897-018-0291-z