Translation and adaptation of skin cancer genomic risk education materials for implementation in primary care
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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.
KeywordsCognitive interviews Melanoma Genetic testing MC1R Hispanics
Compliance with ethical standards
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.
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 was obtained from all individual participants included in the study.
- Bills GD, Vigil NA (2008) The Spanish language of New Mexico and Southern Colorado: a linguistic atlas. University of New Mexico Press, AlbuquerqueGoogle Scholar
- Halbert CH, Kessler L, Collier A, Weathers B, Stopfer J, Domchek S, McDonald JA (2012) Low rates of African American participation in genetic counseling and testing for BRCA1/2 mutations: racial disparities or just a difference? J Genet Couns 21:676–683. doi: 10.1007/s10897-012-9485-y CrossRefPubMedPubMedCentralGoogle Scholar
- Hindorff LA, Sethupathy P, Junkins HA, Ramos EM, Mehta JP, Collins FS, Manolio TA (2009) Potential etiologic and functional implications of genome-wide association loci for human diseases and traits. Proc Natl Acad Sci U S A 106:9362–9367. doi: 10.1073/pnas.0903103106 CrossRefPubMedPubMedCentralGoogle Scholar
- Kaphingst KA, Stafford JD, McGowan LD, Seo J, Lachance CR, Goodman MS (2015) Effects of racial and ethnic group and health literacy on responses to genomic risk information in a medically underserved population. Health Psychology: Official Journal of the Division of Health Psychology, American Psychological Association 34:101–110. doi: 10.1037/hea0000177 CrossRefGoogle Scholar
- National Academy of Sciences, Engineering, and Medicine (2016) Applying an implementation science approach to genomic medicine: workshop summary. Washington, DC. doi:107226/23403Google Scholar
- Nodora JN et al (2016) Biospecimen sharing among Hispanic women in a safety-net clinic: implications for the precision medicine initiative. J Natl Cancer Inst:109. doi: 10.1093/jnci/djw201
- Santiago-Rivas M, Wang C (2014) Sun protection beliefs among Hispanics in the US 2014:161960 doi: 10.1155/2014/161960Google Scholar
- Torres SM, Ramos M, Leverence R, Bowen D, Berwick M, Hay J (2014) A pilot study of skin cancer risk reduction behaviors, cancer communicatin, and skin cancer beliefs in Hispanics California. Journal of Health Promotion 12:95–100Google Scholar
- Willis G, Lawrence D, Hartman A, Stapleton Kudela M, Levin K, Forsyth B (2008) Translation of a tobacco survey into Spanish and Asian languages: the tobacco use supplement to the current population survey. Nicotine & Tobacco Research: Official Journal of the Society for Research on Nicotine and Tobacco 10:1075–1084. doi: 10.1080/14622200802087572 CrossRefGoogle Scholar