Information is power: The experiences, attitudes and needs of individuals who chose to have prenatal genomic sequencing for fetal anomalies

Catherine G. Kernie, Julia Wynn, Allison Rosenbaum, Jessica de Voest, Stephanie Galloway, Jessica Giordano, Samantha Stover, Lauren Westerfield, Kelly Gilmore, Ronald J. Wapner, Ignatia B. Van den Veyver, Neeta L. Vora, Rebecca G. Clifton, Aaron B. Caughey, Wendy K. Chung

Research output: Contribution to journalArticlepeer-review

Abstract

Objective: This study sought to evaluate the experiences of individuals who chose to participate in a study and receive prenatal genomic sequencing (pGS) for fetuses with congenital structural anomalies. Method: Individuals who received research results of prenatal sequencing were invited to participate in semi-structured interviews about their experiences. A constructivist grounded theory approach was used to code and analyze interviews. Results: Thirty-three participants from 27 pregnancies were interviewed. Participants were motivated to enroll in the study to find out more about their fetus' condition and prepare for the future. The waiting period was a time of significant anxiety for participants. Most participants felt relief and closure upon receiving results, regardless of the category of result, and had a clear understanding of the implications of the results. Conclusion: Participants' experiences with pGS were often intertwined with the experience of having a fetus with an abnormality. Participants were satisfied with the decision to participate in research and the support they received from the healthcare team, although waiting for results was associated with anxiety. The healthcare team plays an integral role in setting expectations and validating feelings of anxiety, fear and uncertainty.

Original languageEnglish (US)
Pages (from-to)947-954
Number of pages8
JournalPrenatal Diagnosis
Volume42
Issue number7
DOIs
StatePublished - Jun 2022

ASJC Scopus subject areas

  • Obstetrics and Gynecology
  • Genetics(clinical)

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