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Engaging Adolescents in Decisions About Return of Genomic Research Results
Sponsor: Children's Hospital Medical Center, Cincinnati
Summary
Recent recommendations to return children's results for adult-onset conditions to parents anytime whole exome or genome sequencing is performed, as well as growing expectations to return research results to participants on a large-scale basis, mean adolescents will increasingly be engaged in assenting (\<age 18) and consenting (\>age 18) to return of genomic research results. There is an urgent need to understand adolescents' informational preferences and to create ethically informed, scalable processes that empower adolescents from diverse backgrounds to participate in the decision-making process about learning genomic results. This research will provide important insights into adolescents' choices, as well as the ethical, legal and societal implications of engaging adolescents in making choices about learning genomic results in genomic research and community-based research settings.
Key Details
Gender
All
Age Range
13 Years - 99 Years
Study Type
INTERVENTIONAL
Enrollment
787
Start Date
2020-03-10
Completion Date
2026-11-30
Last Updated
2025-07-23
Healthy Volunteers
Yes
Conditions
Interventions
Electronic Decision Tool
Adolescents and a parent, if applicable, will use an electronic decision tool to make categorical choices of types of diseases (treatable, preventable, adult-onset, and carrier status) they want to learn about the adolescent. Granular choices can be made within each category.
Locations (2)
Michelle McGowan
Rochester, Minnesota, United States
Cincinnati Children's Hospital Medical Center
Cincinnati, Ohio, United States