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

Cragun D1,2, Weidner A3, Kechik J1, Pal T3.

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Abstract

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:

Of the 1182 participants, 61% (174/285) Hispanic versus 65% (580/897) NHW had Hispanic 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.