Engaging Adolescents in Decisions About Return of Genomic Research Results
Running, not enrolling · Not applicable
Conditions studied: Genetic Screening, Adolescent, Genetic Change, Shared Decision Making, Knowledge, Attitudes, Practice, Genetic Testing
In brief
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 facts
- Study ID
- NCT04481061
- Run by
- Children's Hospital Medical Center, Cincinnati
- People needed
- 787
- Starts
- 2020-03-10
- Expected to finish
- 2026-11-30
- Last updated by the study team
- 2025-07-23
Who can join
Age: 13 and older, up to 99. Sex: any. Healthy volunteers: accepted.
You may qualify if…
- Assenting adolescents (13-17 years)
- Consenting adolescents (18-21 years)
- Parent / legal guardian of assenting or consenting adolescent
- Ability to participate in remote study visits, if applicable
You may not qualify if…
- Those who do not meet inclusion criteria
- Those who do not communicate in English
- Individuals with developmental disabilities that interfere with their ability to make independent decisions
Where it is running
- Michelle McGowan — Rochester, Minnesota, United States
- Cincinnati Children's Hospital Medical Center — Cincinnati, Ohio, United States
Full record on ClinicalTrials.gov
Trial information comes from ClinicalTrials.gov and is refreshed daily. TrialsForMe does not provide medical care and does not run the studies it lists.