Black Women's Confidence in the Genetic Information Nondiscrimination Act.

Arnethea L Sutton,John Quillin,Mishaal Khan,Erin Tanner,Vanessa B Sheppard,Alesha Henderson,Alejandra Hurtado-De-Mendoza

doi:10.3390/ijerph16245112

Abstract

Black women at-risk for hereditary breast and ovarian cancer (HBOC) continue to underutilize genetic counseling and testing (GCT). One reason for this disparity is a fear of discrimination from insurance companies if identified as high-risk. The Genetic Information Nondiscrimination Act (GINA) was enacted to protect against this type of discrimination; however, Black women’s levels of confidence in this law are unknown. In this descriptive study, we sought to (1) assess Black women’s confidence in the GINA law and (2) identify multilevel factors related to their confidence in GINA. Ninety-four Black women at-risk of HBOC completed surveys that assessed intrapersonal, interpersonal, and structural factors. Multiple regression analysis determined factors associated with confidence in GINA. Most women were ≤50 years of age (66.0%) and about half never had a cancer diagnosis (51.1%). Confidence in GINA was moderate (mean = 10.67; standard deviation = 2.54; range = 5–15). Women who valued GCT reported more confidence in GINA (β = 0.345; CI 0.017 to 0.673; p = 0.040). Lack of confidence in GINA may serve as a barrier to seeking GCT. Efforts to increase the perceived value of GCT among Black women could be benefited by increasing awareness of national efforts towards privacy protections of genetic information.

Highlights

Breast cancer is the most common cancer among women in the United States and racial disparities exist with regard to cancer outcomes
Black women have a higher incidence of triple negative breast cancer (TNBC), a more aggressive form of breast cancer that is very difficult to treat [2,3,4]
Genetic counseling and testing (GCT), for mutations in BRCA1/2 genes for breast and ovarian cancers, is a beneficial service that assesses the risk of developing hereditary cancers

Summary

Introduction

Breast cancer is the most common cancer among women in the United States and racial disparities exist with regard to cancer outcomes. Black women have the highest mortality rate at 29.5 per 100,000 women, compared to the mortality rate of non-Hispanic white women at 20.8 per 100,000 women [1]. Black women have a higher incidence of triple negative breast cancer (TNBC), a more aggressive form of breast cancer that is very difficult to treat [2,3,4]. Genetic counseling and testing (GCT), for mutations in BRCA1/2 genes for breast and ovarian cancers, is a beneficial service that assesses the risk of developing hereditary cancers. Even with higher incidence of TNBC and higher mortality rates due to breast cancer, Black women are less likely to seek genetic testing (GCT) than their White counterparts [5,6,7,8].

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Conclusion