Parents’ Decision-Making Regarding Whether to Receive Adult-Onset Only Genetic Findings for Their Children: Findings From the BabySeq Project

Authors

Stacey Pereira
Amanda M Gutierrez
Jill Oliver Robinson
Kurt D Christensen
Casie A Genetti
Carrie L Blout Zawatsky
Rebecca L Hsu
Bethany Zettler
Melissa Kurtz Uveges
Richard B Parad
Alan H Beggs
Ingrid A Holm
Robert C Green
Amy L McGuire

Language

English

Publication Date

3-1-2023

Journal

Genetics in Medicine

DOI

10.1016/j.gim.2022.100002

PMID

36549595

PMCID

PMC9992280

PubMedCentral® Posted Date

3-1-2024

PubMedCentral® Full Text Version

Author MSS

Abstract

Purpose: Most professional guidelines recommend against genetic screening for adult-onset only (AO) conditions until adulthood, yet others argue that there may be benefit to disclosing such results. We explored parents' decision-making on this issue in the BabySeq Project, a clinical trial of newborn genomic sequencing.

Methods: We conducted interviews with parents (N = 24) who were given the option to receive actionable AO results for their children. Interviews explored parents' motivations to receive and reasons to decline AO genetic disease risk information, their decision-making process, and their suggestions for supporting parents in making this decision.

Results: Parents noted several motivations to receive and reasons to decline AO results. Most commonly, parents cited early intervention/surveillance (n = 11), implications for family health (n = 7), and the ability to prepare (n = 6) as motivations to receive these results. The most common reasons to decline were protection of the child's future autonomy (n = 4), negative effect on parenting (n = 3), and anxiety about future disease (n = 3). Parents identified a number of ways to support parents in making this decision.

Conclusion: Results show considerations to better support parental decision-making that aligns with their values when offering AO genetic information because it is more commonly integrated into pediatric clinical care.

Keywords

Infant, Newborn, Humans, Child, Adult, Genetic Testing, Parents, Parenting, Motivation, Decision Making, genetics, newborn screening, newborn sequencing, adult onset, ELSI, decision-making

Published Open-Access

yes

Recommended Citation

Pereira, Stacey; Gutierrez, Amanda M; Robinson, Jill Oliver; et al., "Parents’ Decision-Making Regarding Whether to Receive Adult-Onset Only Genetic Findings for Their Children: Findings From the BabySeq Project" (2023). Center for Medical Ethics and Health Policy Staff Publications. 33.
https://digitalcommons.library.tmc.edu/med_ethics/33