Medical mistrust influences black women's level of engagement in BRCA 1/2 genetic counseling and testing

J Natl Med Assoc. Spring 2013;105(1):17-22. doi: 10.1016/s0027-9684(15)30081-x.


Clinical evidence supports the value of BRCA1/2 genetic counseling and testing for managing hereditary breast and ovarian cancer risk; however, BRCA1/2 genetic counseling and testing are underutilized among black women, and reasons for low use remain elusive. We examined the potential influence of sociocultural factors (medical mistrust, concerns about genetic discrimination) on genetic counseling and testing engagement in a sample of 100 black women at increased risk for carrying a BRCA1/2 mutation. Eligible participants fell into 1 of 3 groups: (1) healthy women with at least 1 first-degree relative affected by breast and/or ovarian cancer, (2) women diagnosed with breast cancer at age less than or equal to 50 years; and (3) women diagnosed with breast and/or ovarian cancer at age greater than or equal to 50 years with either 1 first-degree relative or 2 second-degree relatives with breast and/or ovarian cancer. Participants were recruited from clinical anid community settings and completed a semistructured interview. Study variable relationships were examined using bivariate tests and multivariate regression analysis. As expected, genetic counseling and testing engagement among this sample was low (28%). After accounting for;sociodemographic factors and self-efficacy (beta=0.37, p<.001), women with higher medical mistrust had lower genetic counseling and testing engagement (beta=-0.26, p<.01). Community-level and individual interventions are needed to improve utilization of genetic counseling and testing among underserved women. Along with trust building between patients and providers, strategies should enhance women's personal confidence. The impact of medical mistrust on the realization of the benefits of personalized medicine in minority populations should be further examined in future studies.

Publication types

  • Comparative Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • African Americans / genetics*
  • BRCA1 Protein / genetics*
  • Breast Neoplasms / diagnosis*
  • Breast Neoplasms / genetics
  • Breast Neoplasms / psychology
  • Ethics, Professional
  • Female
  • Genetic Counseling / psychology*
  • Genetic Predisposition to Disease
  • Genetic Testing / methods*
  • Humans
  • Middle Aged
  • Mutation
  • Ovarian Neoplasms / diagnosis*
  • Ovarian Neoplasms / genetics
  • Ovarian Neoplasms / psychology
  • Physician-Patient Relations / ethics*
  • Risk Factors


  • BRCA1 Protein