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

Catherine G. Kernie, Columbia University Vagelos College of Physicians & Surgeons, New York, New York, USA.
Julia Wynn, Department of Pediatrics, Columbia University Irving Medical Center, New York, New York, USA.
Allison Rosenbaum, Columbia University Vagelos College of Physicians & Surgeons, New York, New York, USA.
Jessica de Voest, George Washington University Biostatistics Center, Washington, District of Columbia, USA.
Stephanie Galloway, Department of Obstetrics and Gynecology, Columbia University Irving Medical Center, New York, New York, USA.
Jessica Giordano, Department of Obstetrics and Gynecology, Columbia University Irving Medical Center, New York, New York, USA.
Samantha Stover, Department of Obstetrics & Gynecology and Molecular & Human Genetics, Baylor College of Medicine, and Texas Children's Hospital, Houston, Texas, USA.
Lauren Westerfield, Department of Obstetrics & Gynecology and Molecular & Human Genetics, Baylor College of Medicine, and Texas Children's Hospital, Houston, Texas, USA.
Kelly Gilmore, Department of Obstetrics & Gynecology, University of North Carolina Chapel Hill, Chapel Hill, North Carolina, USA.
Ronald J. Wapner, Department of Obstetrics and Gynecology, Columbia University Irving Medical Center, New York, New York, USA.
Ignatia B. Van den Veyver, Department of Obstetrics & Gynecology and Molecular & Human Genetics, Baylor College of Medicine, and Texas Children's Hospital, Houston, Texas, USA.
Neeta L. Vora, Department of Obstetrics & Gynecology, University of North Carolina Chapel Hill, Chapel Hill, North Carolina, USA.
Rebecca G. Clifton, George Washington University Biostatistics Center, Washington, District of Columbia, USA.
Aaron B. Caughey, Department of Obstetrics & Gynecology, Oregon Health & Science University, Portland, Oregon, USA.
Wendy K. Chung, Department of Pediatrics, Columbia University Irving Medical Center, New York, New York, USA.

Document Type

Journal Article

Publication Date

6-1-2022

Journal

Prenatal diagnosis

Volume

42

Issue

7

DOI

10.1002/pd.6153

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.

Department

Public Health Student Works

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