Pregnant Latinas' perspectives on pursuing expanded carrier screening: “It is better to know than not”
Open Access
- 22 March 2023
- journal article
- research article
- Published by Wiley in Journal of Genetic Counseling
- Vol. 32 (4), 887-895
- https://doi.org/10.1002/jgc4.1696
Abstract
With the advance of genetic technologies, the use of expanded carrier screening (ECS) in the prenatal setting is growing. ECS tests for a wide range of inherited genetic disorders regardless of racial/ethnic background and family history. Latinxs are an important ECS stakeholder group as they are the largest minority group with the highest fertility rate in the United States. Yet, the Latinx population has, to date, been underrepresented and understudied in genetics/genomics research. We conducted a study to explore the knowledge and perspectives of pregnant Latinas regarding ECS in which descriptive statistics and content analysis were used to analyze the data. Thirty-two pregnant Latinas - mostly of low educational levels (no education beyond high school) and with less than $20,000 annual household income living in rural areas were surveyed, provided with education about ECS, and interviewed. Participants were found to possess limited knowledge about ECS prior to being interviewed. Most (68.8%), however, expressed interest in pursuing ECS following the educational component that explained ECS. Their interest was mainly driven by the desire to know their baby's chance of developing a genetic disorder, the low risk of ECS procedures for both pregnant Latinas and their fetus, and the opportunity to better prepare for raising a child with a genetic condition. Our findings contribute to the limited research in the genetics/genomics field by providing in-depth insights into the perspectives of pregnant Latinas regarding ECS. Obstetric providers and genetic counselors should provide culturally appropriate education and counseling to empower pregnant Latinas to make informed decisions about the use of ECS.Funding Information
- Texas A and M University
This publication has 29 references indexed in Scilit:
- Development and evaluation of a genomics training program for community health workers in TexasGenetics in Medicine, 2018
- Pregnant Women's Perspectives on Expanded Carrier ScreeningJournal of Genetic Counseling, 2018
- Committee Opinion No. 691: Carrier Screening for Genetic ConditionsObstetrics & Gynecology, 2017
- Committee Opinion No. 690: Carrier Screening in the Age of Genomic MedicineObstetrics & Gynecology, 2017
- Responsible implementation of expanded carrier screeningEuropean Journal of Human Genetics, 2016
- The use of noninvasive prenatal testing in obstetric care: educational resources, practice patterns, and barriers reported by a national sample of cliniciansPrenatal Diagnosis, 2016
- Pregnancy-related anxiety: A concept analysisInternational Journal of Nursing Studies, 2015
- Perceptions of Latinas on the Traditional Prenatal Genetic Counseling ModelJournal of Genetic Counseling, 2014
- Effectiveness of a Web-based genomics training for health educators in TexasGenetics in Medicine, 2014
- Positive Pregnancy Outcomes in Mexican Immigrants: What Can We Learn?Journal of Obstetric, Gynecologic & Neonatal Nursing, 2004