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Pediatric Reporting of Adult-Onset Genomic Results
Sponsor: Geisinger Clinic
Summary
The Investigators will conduct a longitudinal, mixed-methods cohort study to assess primary and secondary psychosocial outcomes among MyCode adolescent participants and their parents, and health behaviors of children who received an adult- or pediatric-onset genomic result. Data will be gathered via quantitative surveys using validated measures of distress, family functioning, quality of life, body image, perceived cancer/heart disease risk, genetic counseling satisfaction, genomics knowledge, and adjustment to genetic information; qualitative interviews with adolescents and parents; and electronic health records review of children's initiation of risk reduction behaviors. The investigators will also conduct empirical and theoretical legal research to examine the loss of chance doctrine and its applicability to genomic research.
Official title: Reporting Adult-Onset Genomic Results to Pediatric Biobank Participants and Parents
Key Details
Gender
All
Age Range
Any - Any
Study Type
INTERVENTIONAL
Enrollment
162
Start Date
2020-11-25
Completion Date
2024-10-31
Last Updated
2026-04-09
Healthy Volunteers
Yes
Interventions
Child(ren) receive an adult-onset result
Assess the psychosocial outcomes and the lived experience of MyCode parents whose child(ren) have received an adult-onset genomic result.
Child(ren) received a pediatric-onset result
Assess the psychosocial outcomes and the lived experience of MyCode parents whose child(ren) have received an pediatric-onset genomic result.
Control - Negative Result
Assess the psychosocial outcomes and the lived experience of MyCode parents whose child(ren) tested negative for the familial genetic variant.
Adolescents who received adult-onset result
Psychological outcomes among adolescents who received an adult-onset result
Adolescents who received a pediatric-onset result
Psychological outcomes among adolescents who received a pediatric-onset result
Adolescent controls - negative for familial variant
Psychological outcomes among adolescents who tested negative for the familial genetic variant
Locations (1)
Geisinger
Danville, Pennsylvania, United States