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.
Pediatrics
|January 6, 2016
Summary
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.
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