Genetic Testing Across Young Hispanic and Non-Hispanic White Breast Cancer Survivors: Facilitators, Barriers, and Awareness of the Genetic Information Nondiscrimination Act

Genet Test Mol Biomarkers. 2019 Feb;23(2):75-83. doi: 10.1089/gtmb.2018.0253. Epub 2019 Jan 24.


Aims: This study compared facilitators and barriers to genetic testing and determined awareness about the Genetic Information Nondiscrimination Act (GINA) across young Hispanic and non-Hispanic white (NHW) breast cancer (BC) survivors.

Materials and methods: Women diagnosed with BC of age ≤50 years in 2009-2012 were recruited through the Florida State Cancer Registry to complete a questionnaire.

Results: There were 1182 participants of which 61% (174/285) of Hispanic patients, and 65% (580/897) of NHW patients had BC testing. Among untested participants, the most common barriers were lack of testing recommendation (44% Hispanics, 32% NHW; p = 0.02) and cost-related concerns (41% Hispanics, 40% NHW; p = 0.83). Among tested participants, the top facilitators were as follows: (1) "To benefit my family's future" (70% Hispanic, 68% NHW), (2) "My doctor recommended testing" (60% Hispanic, 54% NHW), and (3) "Minimal cost to me" (59% Hispanic, 72% NHW). Only 27% of tested and 15% of untested women were aware of GINA; misuse of test results was reported as a barrier for only 6.5%.

Conclusions: Rates of genetic testing recommendation are lower among Hispanics, but both groups reported additional barriers. Most are unaware of GINA, yet misuse is not a highly cited barrier. Findings suggest the need to educate providers on the importance of recommending testing to all who meet criteria; increase awareness of newer options for more affordable testing; and bolster facilitators that may increase testing uptake.

Keywords: GINA awareness; access; barriers and facilitators; genetic testing; hereditary breast and ovarian cancer.

MeSH terms

  • Adult
  • Breast Neoplasms / diagnosis
  • Cancer Survivors
  • Communication Barriers
  • Ethnicity / genetics
  • Female
  • Florida
  • Genetic Testing / methods
  • Health Knowledge, Attitudes, Practice / ethnology*
  • Hispanic or Latino / genetics
  • Hispanic or Latino / psychology*
  • Humans
  • Middle Aged
  • Risk Factors
  • Socioeconomic Factors
  • Survivors
  • White People / ethnology*
  • White People / genetics