• NIH Sep 19, 2018 | R01

    Reporting Adult-Onset Genomic Results to Pediatric Biobank Participants and Parents

    Principal Investigator(s): BUCHANAN, ADAM H;

    Institution: GEISINGER CLINIC

    FOA Number: PA-18-345

    Abstract

    Project Narrative The potential benefits and harms of returning genomic results to children and their parents are matters of enduring controversy?especially genomic results for adult-onset conditions that are not medically actionable in childhood. Empirical data to support either position in this controversy are, however, lacking. We propose to assess the psychosocial, behavioral and legal impact of disclosing adult-onset genomic findings to children and their parents, thereby providing much-needed guidance to national and international groups performing genome-scale testing of children, as well as other groups considering population screening for genomic c onditions .

    FUNDING AGENCY:

    Funder:
    NIH

    Institute:
    NATIONAL HUMAN GENOME RESEARCH INSTITUTE

    Funding Type:
    R01

    Project Number:
    R01HG009671

    Start Date:
    Sep 19, 2018

    End Date:
    Jun 30, 2023

    PROJECT TERMS:

    Address, Adolescent, Adolescent Development, Adult, Affect, Anxiety, base, Behavioral, behavioral outcome, biobank, Bioethics Consultants, Body Image, Breast Cancer Risk Factor, cancer risk, Caring, Child, Child Development, Child Health, Childhood, Clinical, Cohort Studies, Community Health, Data, Disclosure, Discrimination, disorder risk, Distress, Electronic Health Record, Enrollment, Equilibrium, ethical legal social implication, evidence base, Evidence based program, experience, Family, Future, Genes, Genetic Counseling, Genetic Diseases, genetic information, genetic variant, genome-wide, Genomics, Goals, Health behavior, health related quality of life, Healthcare, heart disease risk, Hereditary Breast and Ovarian Cancer Syndrome, Hereditary Breast Carcinoma, Hereditary Nonpolyposis Colorectal Neoplasms, Inherited, innovation, International, Interview, Judgment, Knowledge, Laws, Legal, Life, Literature, Malignant Neoplasms, Measures, Medical, Mental Depression, Methods, Onset of illness, Outcome, Parents, Participant, Pathogenicity, pediatrician, Policies, Policy Maker, Population, Positioning Attribute, pressure, prevent, Preventive measure, Procedures, programs, Psychologist, psychosocial, Quality of life, Recovery, Reporting, Research, Research Design, Research Personnel, Risk Reduction, Risk Reduction Behavior, satisfaction, Savings, screening, Social Workers, Statutes and Laws, Surveys, Testing, Tort, uptake, Variant, Wrestling

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