Identifying strategies to reveal genetic results over the lifespan

NIH Sep 1, 2023 | K99

Identifying strategies to reveal genetic results over the lifespan

Principal Investigator(s): LEWIS, ANNA

Institution: Brigham and Women's Hospital

FOA Number: PA-20-188

Abstract

PROJECT NARRATIVE If healthy babies are sequenced near birth, when should genetic information relevant to later stages of their lives be revealed? There are different possible strategies for when this genomic information is revealed, and this research will determine their clinical feasibility, analyze their ethical, legal and social implications, understand diverse parents' preferences, and seek consensus on the necessary and desirable features of a strategy. The project will generate concrete recommendations for implementers of newborn sequencing and will hence help ensure the ethical rollout of genomic medicine for all.

FUNDING AGENCY:

Funder:
NIH

Institute:
National Human Genome Research Institute

Funding Type:
K99

Project Number:
1K99HG012809-01A1

Start Date:
Sep 1, 2023

End Date:
Aug 31, 2025

PROJECT TERMS:

Decision making , Specific qualifier value, screening panel, Genetic Diseases, genetic screening , Legal Obligations, Gene Targeting

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