Latinx individuals’ knowledge of, preferences for, and experiences with prenatal genetic testing: a scoping review
Authors:
Open Access
- 6 June 2022
- journal article
- review article
- Published by Springer Nature in Reproductive Health
- Vol. 19 (1) , 1-21
Abstract
Background: The American College of Obstetricians and Gynecologists recommends prenatal genetic testing (PGT) be offered to all pregnant persons regardless of known risk factors. However, significant racial/ethnic differences exist regarding acceptance of PGT contributing to disparities. Latinas (Latinx), one of the fastest growing ethnic groups in the United States, have low PGT acceptance rates. This systematic scoping review aimed to provide a landscape of existing literature on Latinx individuals’ knowledge of, preferences for, and experiences with prenatal and preconception genetic testing. Synthesizing the current state of the science may inform development of culturally tailored interventions to support high-quality PGT decisions (e.g., informed, aligned with a pregnant persons’ values).Methods: We conducted a structured, systematic literature search of published articles and gray literature in electronic databases (PubMed, PsycINFO, CINAHL, Medline, Embase, Eric, Social Services Abstracts, and PsycArticles). Articles in English published prior to March 2021 were retrieved relating to genetics, pregnancy, and Latina women. Articles underwent title, abstract and full-text review by independent investigators to assess inclusion and exclusion criteria. Risk of bias was evaluated by two investigators. Iterative thematic analysis was employed to group study findings into themes to identify possible targets for interventions.Results: The search generated 5511 unique articles. After title screening, 335 underwent abstract review and subsequently 61 full-text review. Twenty-eight studies met inclusion criteria and 7 additional studies were included after reviewing reference lists. Three overarching themes emerged: genetic knowledge/literacy (26/35, 74%), provider (mis)communication/patient satisfaction (21/35, 60%), and cross-cultural beliefs (12/35, 34%). Studies indicate discordant patient-provider language (n = 5), miscommunication (n = 4), and lack of concordant decision-making (n = 4) pose barriers to high-quality PGT decisions. Immigration status (n = 1) and religious beliefs (n = 5) are additional factors influencing PGT decisions.Conclusions: Identified studies suggest that cultural and linguistic factors affect Latinx PGT decision-making. Latinx individual’s comprehension and recall of PGT information is enhanced by culturally and linguistically concordant providers—suggesting that culturally-informed interventions may enhance PGT acceptability and support high-quality decisions. Future directions to surmount PGT disparities may include community health workers and cultural brokers to empower Latinx people to make informed decisions aligned with their values and preferences.Keywords
Funding Information
- Boston College Type 2 Schiller Institute Grant for Exploratory Collaborative Scholarship
- Boston College Type 2 Schiller Institute Grant for Exploratory Collaborative Scholarship
This publication has 51 references indexed in Scilit:
- Genetic screening in a university clinic: impact of primary languagePrenatal Diagnosis, 2011
- Interrogating the dynamics between power, knowledge and pregnant bodies in amniocentesis decision makingSociology of Health & Illness, 2010
- Do Notions of Risk Inform Patient Choice? Lessons from a Study of Prenatal Genetic CounselingMedical Anthropology, 2006
- The routine and the traumatic in prenatal genetic diagnosis: does clinical information inform patient decision-making?Patient Education and Counseling, 2005
- “I'm Not the One They're Sticking the Needle Into”Gender & Society, 2003
- Social and familial context of prenatal genetic testing decisions: Are there racial/ethnic differences?American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 2003
- Interpreting Low-Income Latinas’ Amniocentesis RefusalsHispanic Journal of Behavioral Sciences, 2000
- Genetic Services to the Latino Population in the United StatesPublic Health Genomics, 1998
- Informed Consent for Maternal Serum Alpha-fetoprotein Screening in an Inner City Population: How Informed Is It?Journal of Obstetric, Gynecologic, & Neonatal Nursing, 1998
- ‘Collective Fictions’: Similarities in Reasons for Accepting Maternal Serum Alpha-Fetoprotein Screening among Women of Diverse Ethnic and Social Class BackgroundsFetal Diagnosis and Therapy, 1993