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Translation and adaptation of skin cancer genomic risk education materials for implementation in primary care

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Abstract

Genomic medicine has revolutionized disease risk identification and subsequent risk reduction interventions. Skin cancer risk genomic feedback is a promising vehicle to raise awareness and protective behaviors in the general population, including Hispanics who are largely unaware of their risks. Yet, personalized genomics currently has limited reach. This study is the initial phase of a randomized controlled trial investigating the personal utility and reach of genomic testing and feedback for melanoma. Semi-structured cognitive interviews (N = 28), stratified across education level, were conducted to assess the comprehension and acceptability of translated skin cancer genomic risk education materials with Spanish-speaking Hispanic primary care patients. Overall, materials were comprehensible and acceptable with 33 of 246 terms/concepts identified as difficult. Common problems included translation challenges (e.g., peeling from sunburn), ambiguous concepts (e.g., healthcare system), and problematic terms (e.g., risk version). Aiming to expand the reach of genomic medicine across subpopulations that may benefit from it, necessary modifications were made to education materials to improve comprehensibility, acceptability, and cultural relevance.

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Authors and Affiliations

  1. Memorial Sloan Kettering Cancer Center, 641 Lexington Ave. 7th Floor, New York, NY, 10022, USA

    Vivian M. Rodríguez, Kate Zielaskowski, C. Javier González & Jennifer L. Hay

  2. University of New Mexico, Albuquerque, NM, USA

    Erika Robers, Keith Hunley, Dolores D. Guest, Andrew Sussman, Kirsten A. Meyer White, Matthew R. Schwartz, Jennie Greb, Yvonne Talamantes, Jessica Bigney & Marianne Berwick

  3. University of Utah, Salt Lake City, UT, USA

    Kimberly A. Kaphingst

Authors
  1. Vivian M. Rodríguez
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  2. Erika Robers
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  3. Kate Zielaskowski
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  4. C. Javier González
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  5. Keith Hunley
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  6. Kimberly A. Kaphingst
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  7. Dolores D. Guest
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  8. Andrew Sussman
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  11. Jennie Greb
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  12. Yvonne Talamantes
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  13. Jessica Bigney
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  14. Marianne Berwick
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  15. Jennifer L. Hay
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Corresponding author

Correspondence to Vivian M. Rodríguez.

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Funding/support

This work was supported by the National Cancer Institute’s Research Grant (R01 CA181241-01A1) and Support/Core Grant (P30 CA008748). Dr. Rodríguez was supported by a training grant (T32 CA009461).

Conflict of interest

Vivian M. Rodríguez declares that she has no conflict of interest. Erika Robers declares that she has no conflict of interest. Kate Zielaskowski declares that she has no conflict of interest. C. Javier González declares that he has no conflict of interest. Keith Hunley declares that he has no conflict of interest. Kimberly A. Kaphingst declares that she has no conflict of interest. Dolores D. Guest declares that she has no conflict of interest. Andrew Sussman declares that he has no conflict of interest. Kirsten A. Meyer White declares that she has no conflict of interest. Matthew R. Schwartz declares that he has no conflict of interest. Jennie Greb declares that she has no conflict of interest. Yvonne Talamantes declares that she has no conflict of interest. Jessica Bigney declares that she has no conflict of interest. Marianne Berwick declares that she has no conflict of interest. Jennifer L. Hay declares that she has no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

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Rodríguez, V.M., Robers, E., Zielaskowski, K. et al. Translation and adaptation of skin cancer genomic risk education materials for implementation in primary care. J Community Genet 8, 53–63 (2017). https://doi.org/10.1007/s12687-016-0287-z

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  • DOI: https://doi.org/10.1007/s12687-016-0287-z

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