Do Women who Receive a Negative BRCA1/2 Risk Result Understand the Implications for Breast Cancer Risk?

Public Health Genomics. 2019;22(3-4):102-109. doi: 10.1159/000503129. Epub 2019 Oct 9.

Abstract

Background/aims: National guidelines endorse using evidence-based tools to identify those at risk for hereditary breast and ovarian cancer (HBOC). This study aimed to evaluate whether women deemed not to be at increased risk of being a BRCA mutation carrier; the majority of those screened, recall, understand and accept the implications of these results for breast cancer risk.

Methods: We conducted an online survey with women (n = 148) who screened negative on a brief HBOC screener.

Results: While women tended to accept HBOC screener as accurate (range 9-45; mean 32, SD 5.0), less than half (43%) accurately recalled their result. Only 52% understood that they were at low risk of carrying a mutation, and just 34% correctly understood their breast cancer risk. African American women were less likely to recall (33 vs. 53% respectively, OR 0.5, p = 0.03), understand (42 vs. 63% respectively, OR 0.4, p = 0.02), and accept (mean 31 vs. 33 respectively, β -2.1, p = 0.02) the result compared to Whites.

Conclusions: Our findings show that those at low risk of carrying a BRCA1/2 mutation had limited understanding of the distinction between mutation risk and breast cancer risk. Theory-based communication strategies are needed to increase the understanding of the implications of being at low risk for hereditary cancers.

Keywords: Breast cancer; Genetic screening; Health communication; Health risk assessment; Hereditary breast and ovarian cancer syndrome.

Publication types

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

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • BRCA1 Protein / genetics
  • BRCA2 Protein / genetics
  • Breast Neoplasms / genetics
  • Breast Neoplasms / psychology
  • Comprehension*
  • Early Detection of Cancer
  • Female
  • Genes, BRCA1*
  • Genes, BRCA2*
  • Humans
  • Middle Aged
  • Mutation / genetics
  • Ovarian Neoplasms / genetics
  • Ovarian Neoplasms / psychology
  • Pilot Projects
  • Risk Factors

Substances

  • BRCA1 Protein
  • BRCA1 protein, human
  • BRCA2 Protein
  • BRCA2 protein, human

Supplementary concepts

  • Breast Cancer, Familial