Latinx attitudes, barriers, and experiences with genetic counseling and testing: A systematic review
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, synthesizin...
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Veröffentlicht in: | Journal of genetic counseling 2023-02, Vol.32 (1), p.166-181 |
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description | 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. |
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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.</description><identifier>ISSN: 1059-7700</identifier><identifier>EISSN: 1573-3599</identifier><identifier>DOI: 10.1002/jgc4.1632</identifier><identifier>PMID: 36301246</identifier><language>eng</language><publisher>United States: Blackwell Publishing Ltd</publisher><subject>acculturation ; Attitude to Health ; barriers ; Breast cancer ; Breast Neoplasms - diagnosis ; Breast Neoplasms - genetics ; Communication ; Competence ; Decision making ; disparities ; Female ; Genetic counseling ; Genetic Counseling - psychology ; Genetic screening ; Genetic Testing ; Health care ; Hispanic ; Hispanic or Latino ; Humans ; Latinx ; Literature reviews ; Medical personnel ; Medical referrals ; Numeracy ; Original ; Ovarian cancer ; Ovarian Neoplasms - diagnosis ; Ovarian Neoplasms - genetics ; patient experience ; Patient Preference ; Patients ; Population studies ; Pregnancy ; Prenatal testing ; Professional attitudes ; Systematic review ; Tests ; Treatment preferences ; underrepresented populations ; United States</subject><ispartof>Journal of genetic counseling, 2023-02, Vol.32 (1), p.166-181</ispartof><rights>2022 The Authors. published by Wiley Periodicals LLC on behalf of National Society of Genetic Counselors.</rights><rights>2022 The Authors. Journal of Genetic Counseling published by Wiley Periodicals LLC on behalf of National Society of Genetic Counselors.</rights><rights>2022. This article is published under http://creativecommons.org/licenses/by/4.0/ (the “License”). 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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.</description><subject>acculturation</subject><subject>Attitude to Health</subject><subject>barriers</subject><subject>Breast cancer</subject><subject>Breast Neoplasms - diagnosis</subject><subject>Breast Neoplasms - genetics</subject><subject>Communication</subject><subject>Competence</subject><subject>Decision making</subject><subject>disparities</subject><subject>Female</subject><subject>Genetic counseling</subject><subject>Genetic Counseling - psychology</subject><subject>Genetic screening</subject><subject>Genetic Testing</subject><subject>Health care</subject><subject>Hispanic</subject><subject>Hispanic or Latino</subject><subject>Humans</subject><subject>Latinx</subject><subject>Literature reviews</subject><subject>Medical personnel</subject><subject>Medical referrals</subject><subject>Numeracy</subject><subject>Original</subject><subject>Ovarian cancer</subject><subject>Ovarian Neoplasms - diagnosis</subject><subject>Ovarian Neoplasms - genetics</subject><subject>patient experience</subject><subject>Patient Preference</subject><subject>Patients</subject><subject>Population studies</subject><subject>Pregnancy</subject><subject>Prenatal testing</subject><subject>Professional attitudes</subject><subject>Systematic review</subject><subject>Tests</subject><subject>Treatment preferences</subject><subject>underrepresented populations</subject><subject>United States</subject><issn>1059-7700</issn><issn>1573-3599</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2023</creationdate><recordtype>article</recordtype><sourceid>24P</sourceid><sourceid>WIN</sourceid><sourceid>EIF</sourceid><sourceid>7QJ</sourceid><recordid>eNp1kU1v1DAQhiMEoqVw4A-gSFyKRNrxVxJzQdUKCtVKXOBsOfYk9SrrLLbT7f77erulAqSePNY8ejzjtyjeEjgjAPR8NRh-RmpGnxXHRDSsYkLK57kGIaumATgqXsW4AgDZCvKyOGI1A0J5fVzYpU7O35Y6JZdmi_Fj2ekQHIZcaW9LvN1gvnqDsdy6dF0O6DE5U5pp9hFH54d7LmHMouFTeVHGXUy41nso4I3D7eviRa_HiG8ezpPi19cvPxffquWPy--Li2VlOOe0sq2RuuWSc8YYWAGaCCaYqYXlXc8kGg0UWG0JlV3H2kboTghLwaDodU_ZSfH54N3M3RqtQZ-CHtUmuLUOOzVpp_7teHethulG5V-URNYyG04fDGH6PeeV1NpFg-OoPU5zVLShUhDOJM_o-__Q1TQHn_fLVMOhAU7aTH04UCZMMQbsH6chsH-Wqn14ah9eZt_9Pf4j-SetDJwfgK0bcfe0SV1dLvi98g5F-6RH</recordid><startdate>202302</startdate><enddate>202302</enddate><creator>Dron, Heather A.</creator><creator>Bucio, Daiana</creator><creator>Young, Jennifer L.</creator><creator>Tabor, Holly K.</creator><creator>Cho, Mildred K.</creator><general>Blackwell Publishing Ltd</general><general>John Wiley and Sons Inc</general><scope>24P</scope><scope>WIN</scope><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7QJ</scope><scope>8FD</scope><scope>FR3</scope><scope>K9.</scope><scope>NAPCQ</scope><scope>P64</scope><scope>RC3</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0001-7162-5436</orcidid><orcidid>https://orcid.org/0000-0003-1669-3932</orcidid><orcidid>https://orcid.org/0000-0002-7558-3445</orcidid><orcidid>https://orcid.org/0000-0003-0313-113X</orcidid><orcidid>https://orcid.org/0000-0003-1005-5008</orcidid></search><sort><creationdate>202302</creationdate><title>Latinx attitudes, barriers, and experiences with genetic counseling and testing: A systematic review</title><author>Dron, Heather A. ; 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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. 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subjects | acculturation Attitude to Health barriers Breast cancer Breast Neoplasms - diagnosis Breast Neoplasms - genetics Communication Competence Decision making disparities Female Genetic counseling Genetic Counseling - psychology Genetic screening Genetic Testing Health care Hispanic Hispanic or Latino Humans Latinx Literature reviews Medical personnel Medical referrals Numeracy Original Ovarian cancer Ovarian Neoplasms - diagnosis Ovarian Neoplasms - genetics patient experience Patient Preference Patients Population studies Pregnancy Prenatal testing Professional attitudes Systematic review Tests Treatment preferences underrepresented populations United States |
title | Latinx attitudes, barriers, and experiences with genetic counseling and testing: A systematic review |
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