2023 ACMG Annual Clinical Genetics Meeting Digital Edition: Poster Gallery-<em>'Estamos Perdidos</em> [We are Lost]': Exploring Genetic Testing Decision Making Pathways for Latinx Populations

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Latinx populations in the US have shown strong interest in genetic testing, but many lack knowledge on how to use testing services, highlighting a significant barrier to uptake. Previous research has identified individual and systemic-level barriers to testing utilization, such as lack of knowledge, lower access to healthcare, potential results, language preference, lack of insurance, access to specialists, and availability of care in preferred language. Facilitating factors, such as the use of promotoras, have also been explored.<br /><br />To address the gap in understanding the decision-making pathways of Latinx populations regarding genetic testing, this study conducted individual interviews with a Latinx-only cohort. The interviews targeted relevant referents, socio-environmental facilitators, and barriers related to testing uptake. The study employed a community-engaged approach to directly engage with participants and gain insights into factors influencing testing behavior.<br /><br />The results of the study, based on 14 interviews (4 participants had genetic testing, 10 did not), showed that participants had overwhelmingly positive attitudes towards genetic testing. Many believed in its proactive role in prevention and its potential benefits for themselves, their families, and the larger Latinx community. Supportive networks of family and friends were also identified as potential encouragers of testing.<br /><br />However, significant barriers to testing uptake were observed. Many participants expressed a lack of understanding about the purpose of testing, potential results, and their implications. Some noted that their primary care providers rarely mentioned genetic testing. Language preference was also a critical barrier, as those who had tested reported receiving services in English.<br /><br />The study suggests that more outreach is needed to educate Latinx populations about genetic testing, as well as to educate healthcare providers about the purposes of testing. Additionally, there is a need to create systemic facilitators, particularly in language, to encourage testing uptake in these populations. These efforts can help improve access to and utilization of genetic testing services among Latinx populations.

Asset Subtitle

Presenting Author - Daniel Chavez-Yenter, MPH, PhD(c); Co-Author - Kimberly A. Kaphingst, ScD;

Meta Tag

Ethical Legal and Social Issues

Genetic Testing

Psychosocial Issues

Public Patient and Professional Education

Co-Author Kimberly A. Kaphingst, ScD

Presenting Author Daniel Chavez-Yenter, MPH, PhD(c)

Keywords

Latinx populations

genetic testing

knowledge

barriers

language preference

access to healthcare

potential results

supportive networks

testing behavior

education