# Engaging adolescents in decisions about return of genomic research results

> **NIH NIH R01** · CINCINNATI CHILDRENS HOSP MED CTR · 2022 · $727,966

## Abstract

PROJECT ABSTRACT: The purpose of this study is to assess assenting and consenting
adolescents’ choices about learning genomic research results. We will refine existing decision
tools and processes to promote informed genomic decision-making through the use of focus
groups with adolescents and parents recruited from an existing genomic research study and a
diverse, medically-underserved community to assess whether and how recruitment pathways
impact perceived value, risks, and benefits of participation in genomic research and return of
personal genomic information. Once these materials have been refined, consenting adolescents
between the ages of 18-21, assenting adolescents between the ages of 13-17, and their parents
(optional for consenting adolescents) will be invited to make choices using an electronic
decision tool for an actual return of results study using two different genome sequencing panels.
A joint decision-making process involving adolescents, a parent (if applicable), and a study team
member will facilitate confirmation of choices. A subset of adolescents will also be asked to
reflect upon the genetic results they chose to learn, factors that impacted their choices, and
decision-stability during in-depth interviews. Genomic research results will be returned that
reflect the participants’ choices. Surveys and interviews will be conducted following return of
results to assess participants’ understanding, perceived risks and benefits, psychosocial and
behavioral impact, and whether decisional regret is associated with decisional stability.
Throughout the study legal, ethical, and social issues pertaining to adolescents’ preferences
and responses to return of genomic research results will be explored, including normative
assessments of empirical findings as well as the population-level utility and impact of involving
adolescents in the decision-making process. Findings from this study will contribute to filling a
critical gap in the literature regarding engaging adolescents’ in the decision to learn genomic
research results, and will help inform best practices with adolescent populations. This
information is critical given recent recommendations by the American College of Medical
Genetics to return children’s results for adult onset conditions to parents’ anytime whole exome
or genome sequencing is performed. Findings from this study will also help inform a growing
expectation to return research results on a large-scale basis, necessitating examination of
ethical return of research results with a range of populations recruited from a variety of settings.

## Key facts

- **NIH application ID:** 10440443
- **Project number:** 5R01HG010166-04
- **Recipient organization:** CINCINNATI CHILDRENS HOSP MED CTR
- **Principal Investigator:** Michelle L McGowan
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2022
- **Award amount:** $727,966
- **Award type:** 5
- **Project period:** 2019-09-01 → 2024-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10440443

## Citation

> US National Institutes of Health, RePORTER application 10440443, Engaging adolescents in decisions about return of genomic research results (5R01HG010166-04). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10440443. Licensed CC0.

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