Center for Medical Ethics and Health Policy Staff Publications
Language
English
Publication Date
1-1-2024
Journal
Journal of Law, Medicine & Ethics
DOI
10.1017/jme.2024.123
PMID
39435922
PMCID
PMC11870237
PubMedCentral® Posted Date
2-28-2025
PubMedCentral® Full Text Version
Author MSS
Abstract
As the federal government continues to expand upon and improve its data sharing policies over the past 20 years, complex challenges remain. Our interviews with U.S. academic genetic researchers (n=23) found that the burden, translation, industry limitations, and consent structure of data sharing remain major governance challenges.
Keywords
Humans, Information Dissemination, United States, Genetic Research, Genomics, Research Personnel, Genetics, Data Sharing, Genetic Testing, National Institutes Of Health
Published Open-Access
yes
Recommended Citation
Spector-Bagdady, Kayte; Ryan, Kerry A; McGuire, Amy L; et al., ""A Double-Edged Sword": A Brief History of Genomic Data Governance and Genetic Researcher Perspectives on Data Sharing" (2024). Center for Medical Ethics and Health Policy Staff Publications. 276.
https://digitalcommons.library.tmc.edu/med_ethics/276