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

Sutton AL1, Henderson A1, Hurtado-de-Mendoza A2, Tanner E3, Khan M1, Quillin J4, Sheppard VB1,5.

Author information

1: Department of Health Behavior and Policy, Virginia Commonwealth University School of Medicine, Richmond, VA 23298, USA.
2: Department of Oncology, Georgetown University Medical Center, Washington, DC 20007, USA.
3: Greater Washington Maternal-Fetal Medicine and Genetics, Rockville, MD 47872, USA.
4: Department of Human and Molecular Genetics, Virginia Commonwealth University School of Medicine, Richmond, VA 23298, USA.
5: Office of Health Equity and Disparities Research, VCU Massey Cancer Center, Richmond, VA 23298, USA.

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.