Latinas' knowledge of and experiences with genetic cancer risk assessment: Barriers and facilitators

J Genet Couns. 2020 Aug;29(4):505-517. doi: 10.1002/jgc4.1201. Epub 2019 Dec 27.

Abstract

Disparities in genetic cancer risk assessment (GCRA) uptake persist between Latinas and Non-Hispanic Whites. This study utilized a mental model approach to interview 20 Latinas (10 affected, 10 unaffected) at increased risk for hereditary breast and ovarian cancer (HBOC). Participants were asked about their knowledge and perceptions of GCRA, HBOC, risk, benefits, motivators, barriers, challenges, and experiences with GCRA. Using the Consensual Qualitative Analysis Framework, two authors independently coded the interviews and applied the final codes upon consensus. Additionally, interviews were coded to identify whether participants spontaneously brought up certain topics without a prompt. Findings identified multiple barriers and facilitators to GCRA uptake in this population, including patient level psychosocial/cultural factors (e.g., limited knowledge, worry about relatives' risk) and healthcare system factors (e.g., receiving no referrals). There were notable differences in awareness and knowledge between affected and unaffected women (e.g., genetic testing awareness), as well as knowledge gaps that were evident in both groups (e.g., age of diagnosis as a risk factor). To reduce disparities in GCRA uptake, interventions should address identified facilitators and barriers. Differences in knowledge and awareness between affected and unaffected women support the development of targeted interventions that address specific knowledge gaps. This study was registered in ClinicalTrials.gov (NCT03075540) by Alejandra Hurtado de Mendoza, Ph.D.

Keywords: HBOC; Hispanic; Latina; attitudes; barriers; disparities; disparity; experiences; facilitators; genetic counseling; genetic testing; knowledge; perceptions; underrepresented populations.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adult
  • Breast Neoplasms / genetics*
  • Case-Control Studies
  • Female
  • Genes, BRCA1
  • Genes, BRCA2
  • Genetic Predisposition to Disease*
  • Genetic Testing*
  • Hispanic Americans / psychology*
  • Humans
  • Knowledge
  • Middle Aged
  • Motivation
  • Ovarian Neoplasms / genetics*
  • Risk Assessment

Supplementary concepts

  • Breast Cancer, Familial

Associated data

  • ClinicalTrials.gov/NCT03075540