Cargando…

Black Women’s Confidence in the Genetic Information Nondiscrimination Act

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 e...

Descripción completa

Detalles Bibliográficos
Autores principales: Sutton, Arnethea L., Henderson, Alesha, Hurtado-de-Mendoza, Alejandra, Tanner, Erin, Khan, Mishaal, Quillin, John, Sheppard, Vanessa B.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6950717/
https://www.ncbi.nlm.nih.gov/pubmed/31847347
http://dx.doi.org/10.3390/ijerph16245112
_version_ 1783486136688050176
author Sutton, Arnethea L.
Henderson, Alesha
Hurtado-de-Mendoza, Alejandra
Tanner, Erin
Khan, Mishaal
Quillin, John
Sheppard, Vanessa B.
author_facet Sutton, Arnethea L.
Henderson, Alesha
Hurtado-de-Mendoza, Alejandra
Tanner, Erin
Khan, Mishaal
Quillin, John
Sheppard, Vanessa B.
author_sort Sutton, Arnethea L.
collection PubMed
description 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.
format Online
Article
Text
id pubmed-6950717
institution National Center for Biotechnology Information
language English
publishDate 2019
publisher MDPI
record_format MEDLINE/PubMed
spelling pubmed-69507172020-01-16 Black Women’s Confidence in the Genetic Information Nondiscrimination Act Sutton, Arnethea L. Henderson, Alesha Hurtado-de-Mendoza, Alejandra Tanner, Erin Khan, Mishaal Quillin, John Sheppard, Vanessa B. Int J Environ Res Public Health Article 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. MDPI 2019-12-14 2019-12 /pmc/articles/PMC6950717/ /pubmed/31847347 http://dx.doi.org/10.3390/ijerph16245112 Text en © 2019 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Sutton, Arnethea L.
Henderson, Alesha
Hurtado-de-Mendoza, Alejandra
Tanner, Erin
Khan, Mishaal
Quillin, John
Sheppard, Vanessa B.
Black Women’s Confidence in the Genetic Information Nondiscrimination Act
title Black Women’s Confidence in the Genetic Information Nondiscrimination Act
title_full Black Women’s Confidence in the Genetic Information Nondiscrimination Act
title_fullStr Black Women’s Confidence in the Genetic Information Nondiscrimination Act
title_full_unstemmed Black Women’s Confidence in the Genetic Information Nondiscrimination Act
title_short Black Women’s Confidence in the Genetic Information Nondiscrimination Act
title_sort black women’s confidence in the genetic information nondiscrimination act
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6950717/
https://www.ncbi.nlm.nih.gov/pubmed/31847347
http://dx.doi.org/10.3390/ijerph16245112
work_keys_str_mv AT suttonarnetheal blackwomensconfidenceinthegeneticinformationnondiscriminationact
AT hendersonalesha blackwomensconfidenceinthegeneticinformationnondiscriminationact
AT hurtadodemendozaalejandra blackwomensconfidenceinthegeneticinformationnondiscriminationact
AT tannererin blackwomensconfidenceinthegeneticinformationnondiscriminationact
AT khanmishaal blackwomensconfidenceinthegeneticinformationnondiscriminationact
AT quillinjohn blackwomensconfidenceinthegeneticinformationnondiscriminationact
AT sheppardvanessab blackwomensconfidenceinthegeneticinformationnondiscriminationact