Potential Psychosocial Risks of Sequencing Newborns
Leslie Ann Frankel1, Stacey Pereira2, Amy L McGuire3
1Department of Psychological, Health, and Learning Sciences, The University of Houston, Houston, Texas; and.
Insights
Genomic sequencing in newborns may affect family dynamics, including perceived child vulnerability, parent-child bonding, and blame. The BabySeq Project will study these psychosocial impacts in a randomized controlled trial.
Area of Science:
- Pediatric genomics
- Psychosocial impact of genetic testing
- Family dynamics research
Background:
- Stakeholder recommendations highlight psychosocial risks of pediatric genomic information disclosure.
- Genomic sequencing is increasingly used in pediatric care, necessitating study of its family impact.
- Existing literature suggests potential effects on family dynamics during the newborn period.
Purpose of the Study:
- To systematically investigate the psychosocial impact of newborn genomic sequencing on family dynamics.
- To identify specific domains of family dynamics affected by returning genomic results in newborns.
- To outline methods for studying these complex psychosocial outcomes.
Main Methods:
- Review of psychological and genetic counseling literature to identify key family dynamic domains.
- Examination of perceived child vulnerability, parent-child bonding, and self/partner blame.
- Utilizing the BabySeq Project, a randomized controlled trial comparing genomic information return to standard care in infants.
Main Results:
- Identification of three key domains of family dynamics potentially impacted: perceived child vulnerability, parent-child bonding, and self/partner blame.
- Acknowledgement of the complexity in studying these psychosocial outcomes.
- Establishment of a framework for examination within the BabySeq Project.
Conclusions:
- Newborn genomic sequencing has potential psychosocial impacts on family dynamics that require careful study.
- The BabySeq Project provides a robust design to investigate these impacts.
- Understanding these effects is crucial for responsible implementation of pediatric genomics.
Abstract:
Various stakeholders have issued recommendations regarding the use of genomics in pediatrics. These guidelines are driven in part by concerns about psychosocial risks of disclosing predictive genomic information during childhood. As genomic sequencing becomes more commonly used in pediatric settings, it is important to systematically study the psychosocial impact of genomic sequencing of newborns, including the impact on family dynamics. Through review of the psychological and genetic counseling literature, we identify the following 3 domains of family dynamics that have potential to be impacted by the return of genomic results during the newborn period: perceived child vulnerability, parent-child bonding, and self and partner blame. In this article, we outline the complexity of studying these psychosocial outcomes and our plan to examine them in the BabySeq Project, a randomized controlled trial in both healthy and sick infants, in which the return of genomic information will be compared with standard of care.
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