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:

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