• NIH Sep 1, 2019 | R01

    Engaging adolescents in decisions about return of genomic research results

    Principal Investigator(s): MCGOWAN, MICHELLE , MYERS, MELANIE F (contact);

    Institution: CINCINNATI CHILDRENS HOSP MED CTR

    FOA Number: PA-18-345

    Abstract

    PROJECT NARRATIVE: 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.

    FUNDING AGENCY:

    Funder:
    NIH

    Institute:
    NATIONAL HUMAN GENOME RESEARCH INSTITUTE

    Funding Type:
    R01

    Project Number:
    R01HG010166

    Start Date:
    Sep 1, 2019

    End Date:
    Jun 30, 2024

    PROJECT TERMS:

    Address, Adolescent, Adult, Age, American, anxiety states, Area, Behavioral, behavioral response, Benefits and Risks, Big Data, carrier status, Child, Childhood, Clinical, Clinical Research, Collaborations, community based research, Conflict (Psychology), Consent, Decision Making, design, Disease, Ethics, Exhibits, exome sequencing, expectation, Focus Groups, gene panel, Genetic, Genetic Predisposition to Disease, genome sequencing, Genomic medicine, Genomics, health care service utilization, Human Genetics, insight, Interview, Joints, Learning, Legal, Literature, Measures, Medical Genetics, medical schools, medically underserved, member, minimal risk, next generation sequencing, Outcome, Parents, Participant, Pathway interactions, pediatric patients, Population, Positioning Attribute, preference, Process, process optimization, psychosocial, Reaction, Recommendation, recruit, Regrets, reproductive, Research, Research Personnel, research study, response, Risk, social, Societies, Surveys, Testing, Time, tool, underserved community, virtual, Work

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