How Prenatal Genetic Counselors’ Experiences with Pregnancy Shape Patient Interactions

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Authors

Ferrer, Niki A
Fournier, Leslie

Issue Date

2025-05-01

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thesis_closed

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prenatal , genetic counseling , lived experience , self-disclosure , prenatal diagnostic testing , fertility , Genetics and Genomics

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Human Genetics Theses

Abstract

Prenatal genetic counseling can be a highly emotional and life-altering experience for patients, particularly with high-risk pregnancies. For prenatal genetic counselors (GCs), navigating the landscape of these emotionally sensitive sessions can be especially complex when their own experiences intertwine. This qualitative study explored how GCs’ experiences with pregnancy influenced their counseling approach. Specifically, it examined the precise language GCs use when discussing diagnostic procedures, pregnancy loss/miscarriage, or fertility treatments. To date, minimal research has explored how prenatal GCs' experiences with pregnancy impact the language and level of detail they share with patients. Semi-structured interviews were conducted over Zoom with 14 GCs. Questions were tailored based on the categories assigned from their survey responses, including: (1) CVS/Amniocentesis, (2) IVF/Fertility treatments, (3) Pregnancy loss (including miscarriages, neonatal death, biochemical pregnancies, and ectopic pregnancies). Interview transcripts used thematic analysis to identify commonalities in how GCs describe certain procedures and processes before and after their own personal experiences. Analysis revealed that when discussing diagnostic procedures, GCs emphasized the uniqueness of these experiences for patients, addressing both the physical and emotional aspects to highlight the non-linear nature of these journeys. Additionally, being a prenatal GC does not require personal experience with pregnancy, but those with more genetic counseling experience may be more likely to self-disclose their own experiences. The data from this study could be expanded to explore if/how GCs with personal experience with abortion have had their counseling perspective and style affected.

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