Center for Medical Ethics and Health Policy Staff Publications
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
Published Open-Access
yes
Keywords
Infant, Newborn, Humans, Child, Adult, Genetic Testing, Parents, Parenting, Motivation, Decision Making, genetics, newborn screening, newborn sequencing, adult onset, ELSI, decision-making
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.