Latinx attitudes, barriers, and experiences with genetic counseling and testing: A systematic review

J Genet Couns. 2023 Feb;32(1):166-181. doi: 10.1002/jgc4.1632. Epub 2022 Oct 27.

Abstract

As genetics is increasingly used across clinical settings, there is a need to understand the impact and experiences of diverse patients. This review systematically examined research literature on Latinx experiences with genetic counseling and genetic testing (GC/GT) in the United States, synthesizing key themes and knowledge gaps pertaining to both patient experience and hypothetical scenarios. Findings were based on a systematic search, inclusion, and thematic analysis of 81 empirical peer-reviewed articles published from January 1990 to July 2019 pertaining to Latinx populations and GC/GT. Studies most commonly addressed Latinas' perspectives on GC/GT in prenatal settings or for hereditary breast and ovarian cancer (HBOC). Costs, referrals, and communication were significant barriers to accessing genetic services for many Latinx patients, particularly those with low English proficiency (LEP). Studies highlighted difficulties accessing and communicating in healthcare settings, and how medical context and prior experience with healthcare workers and institutions influenced GC/GT decision-making. Providers' implicit biases about Latinx patients negatively impacted their care and impeded communication. Despite low awareness of cancer GT, Latinx patients often reported interest in learning more about GC/GT or unmet needs for GT discussion and provider involvement. This systematic review identified areas where providers can take action to improve Latinx experiences with GC/GT. Clinicians should elicit and respond to patient preferences about shared decision-making. For patients with low numeracy or LEP, providers should consider tailored educational and communication techniques. Most studies focused on HBOC and prenatal testing, and Latinx patients are heterogeneous, leaving many research questions about Latinx experience with GT/GC in other clinical areas.

Keywords: Hispanic; Latinx; acculturation; barriers; communication; decision-making; disparities; genetic counseling; genetic testing; patient experience; systematic review; underrepresented populations.

Publication types

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

MeSH terms

  • Attitude to Health
  • Breast Neoplasms* / diagnosis
  • Breast Neoplasms* / genetics
  • Female
  • Genetic Counseling* / psychology
  • Genetic Testing
  • Hispanic or Latino*
  • Humans
  • Ovarian Neoplasms* / diagnosis
  • Ovarian Neoplasms* / genetics
  • Patient Preference
  • Pregnancy
  • United States

Supplementary concepts

  • Breast Cancer, Familial