The big reveal: Family disclosure patterns of BRCA genetic test results among young Black women with invasive breast cancer

J Genet Couns. 2020 Jun;29(3):410-422. doi: 10.1002/jgc4.1196. Epub 2020 Jan 7.

Abstract

Despite higher incidence and mortality of breast cancer among younger Black women, genetic testing outcomes remain severely understudied among Blacks. Past research on disclosure of genetic testing results to family members has disproportionately focused on White, educated, high socioeconomic status women. This study addresses this gap in knowledge by assessing (a) to whom Black women disclose genetic test results and (b) if patterns of disclosure vary based on test result (e.g., BRCA1/2 positive, negative, variant of uncertain significance [VUS]). Black women (N = 149) with invasive breast cancer diagnosed age ≤50 years from 2009 to 2012 received free genetic testing through a prospective, population-based study. At 12 months post-testing, women reported with whom they shared their genetic test results. The exact test by binomial distribution was used to examine whether disclosure to female relatives was significantly greater than disclosure to male relatives, and logistic regression analyses tested for differences in disclosure to any female relative, any male relative, parents, siblings, children, and spouses by genetic test result. Most (77%) women disclosed their results to at least one family member. Disclosure to female relatives was significantly greater than disclosure to males (p < .001). Compared to those who tested negative or had a VUS, BRCA1/2-positive women were significantly less likely to disclose results to their daughters (ORBRCA positive = 0.25, 95% CI = 0.07-0.94, p = .041) by 12 months post-genetic testing. Genetic test result did not predict any other type of disclosure (all ps > 0.12). Results suggest that in Black families, one benefit of genetic testing-to inform patients and their family about cancer risk information-is not being realized. To increase breast cancer preventive care among high-risk Black women, the oncology care team should prepare Black BRCA1/2-positive women to share genetic test results with family members and, in particular, their daughters.

Keywords: BRCA1/2 pathogenic variant; breast cancer; communication; disclosure; disparities; family; genetic counseling; genetic testing.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • African Americans / genetics*
  • Breast Neoplasms / genetics*
  • Breast Neoplasms / pathology
  • Child
  • Disclosure
  • Family*
  • Female
  • Genes, BRCA1
  • Genes, BRCA2
  • Genetic Testing / methods
  • Humans
  • Male
  • Middle Aged
  • Neoplasm Invasiveness / genetics*
  • Truth Disclosure*