Abstract

Abstract:

Background. Variants of the APOL1 gene increase risk for kidney failure 10-fold, and are nearly exclusively found in people with African ancestry. To translate genomic discoveries into practice, we gathered information about effects and challenges incorporating genetic risk in clinical care. Methods. An academic-community-clinical team tested 26 adults with self-reported African ancestry for APOL1 variants, conducting in-depth interviews about patients’ beliefs and attitudes toward genetic testing- before, immediately, and 30 days after receiving test results. We used constant comparative analysis of interview transcripts to identify themes. Results. Themes included: Knowledge of genetic risk for kidney failure may motivate providers and patients to take hypertension more seriously, rather than inspiring fatalism or anxiety. Having genetic risk for a disease may counter stereotypes of Blacks as non-adherent or low-literate, rather than exacerbate stereotypes. Conclusion. Populations most likely to benefit from genomic research can inform strategies for genetic testing and future research.

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Additional Information

ISSN
1548-6869
Print ISSN
1049-2089
Pages
pp. 248-260
Launched on MUSE
2017-02-24
Open Access
No
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