Race, Genomics and Chronic Disease: What Patients with African Ancestry Have to Say

J Health Care Poor Underserved. 2017;28(1):248-260. doi: 10.1353/hpu.2017.0020.

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.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adult
  • African Americans / genetics*
  • Apolipoprotein L1 / genetics*
  • Chronic Disease
  • Continental Population Groups / genetics*
  • Female
  • Genetic Testing
  • Genomics*
  • Health Knowledge, Attitudes, Practice
  • Humans
  • Hypertension / ethnology
  • Hypertension / genetics
  • Interviews as Topic
  • Male
  • Middle Aged
  • Renal Insufficiency / ethnology*
  • Renal Insufficiency / genetics*
  • Risk Factors

Substances

  • APOL1 protein, human
  • Apolipoprotein L1