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Cited by 58Race, Genetics, and SocietyPatient-Provider Communication in HealthcareHealth Literacy and Information Accessibility

Precision Medicine: Familiarity, Perceived Health Drivers, and Genetic Testing Considerations Across Health Literacy Levels in a Diverse Sample

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Williams, Jessica R., Yeh, Vivian M., Bruce, Marino A., Szetela, Carolyn, Ukoli, Flora, Wilkins, Consuelo H., Kripalani, Sunil·2019·Journal of Genetic Counseling
DOI 10.1007/s10897-018-0291-zPMC PMC6374217
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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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  • Trust in professionals, costs, receiving counseling about test results and privacy, as well as the donor's religion and culture seem to be important for the decision to participate in trials and donate data or biospecimens.

    “Among patients there is also a high readiness to participate in trials and donate data or biospecimens [62, 70, 72, 76, 77, 98, 99], but trust in professionals [98, 101], costs, receiving counseling about test results and privacy [101], as well as the donor’s religion and culture [98] seem to be important for the decision.”

    From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [101]

    The Results section, under “Values considered important when deciding to get a genetic test,” reports that most participants rated provider trust, cost, counseling about results, and privacy as important. This supports the factors attributed to this paper by citation [101], but the study reports them as considerations for genetic testing, not specifically for deciding whether to participate in trials or donate data or biospecimens. Religion and culture are attributed to a different citation in the citing sentence. (LLM, conf=0.86)

    Experimental — accuracy not yet measured

  • Many patients generally have limited knowledge about precision medicine, genetic testing, and pharmacogenomics.

    “However, as other studies have demonstrated, many patients generally have a limited knowledge about PM [65, 71, 99–102], genetic testing [62, 69, 95] and pharmacogenomics [73, 101] and also express difficulties in understanding [51].”

    From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [101]

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Research works printed but not linked: 1

  1. Wilkins CH (2016). Engagement and Retention National Academies of Science, Engineering, and Medicine. Relevance of health literacy to precision medicine: Proceedings of a workshop Washington, DC: The National Academies Press. 27854398

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Authors
Williams, J. R., Yeh, V. M., Bruce, M. A., Szetela, C., Ukoli, F., Wilkins, C. H., & Kripalani, S.
Affiliations
  • University of North Carolina at Chapel Hill (US)
  • Vanderbilt University Medical Center (US)
  • Vanderbilt University (US)
  • Meharry Medical College (US)
Corresponding author
Williams, Jessica R.
ORCID
Venue
Journal of Genetic Counseling
Publisher
Wiley
Published
2018-12-14
Volume
28
Issue
1
Pages
59-69
ISSN
  • 1059-7700 (ISSN-L)
  • 1573-3599
DOI
10.1007/s10897-018-0291-z
PMC
PMC6374217
OpenAlex
W2885067300
Cited by
58
References
47
Citations by year
2026: 5 · 2025: 12 · 2024: 8 · 2023: 7 · 2022: 8 · 2021: 3 · 2020: 9 · 2019: 5 · 2018: 1
FWCI
2.75
Type
journal article
Language
en
Open access
Licence
onlinelibrary.wiley.com/termsAndConditions#vor (vor)
Locations
  • Journal of Genetic Counseling (publishedVersion)
  • PubMed (publishedVersion)
  • Europe PMC (PubMed Central) (acceptedVersion)
  • PubMed Central (acceptedVersion)
Funders
  • National Institute on Minority Health and Health Disparities
  • National Institutes of Health (U54MD010722)
Topics
  • Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Race, Genetics, and Society
  • Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
  • Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
Keywords
precision medicine, health literacy, genetic testing, patient perspectives, genetic counseling, racial and ethnic differences, trust in providers, health disparities, behavioral determinants of health, Hispanic patients, primary care patients

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