"A Double-Edged Sword": A Brief History of Genomic Data Governance and Genetic Researcher Perspectives on Data Sharing

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 rem...

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Veröffentlicht in:	The Journal of law, medicine & ethics medicine & ethics, 2024, Vol.52 (2), p.399-411
Hauptverfasser:	Spector-Bagdady, Kayte, Ryan, Kerry A, McGuire, Amy L, Krenz, Chris D, Trinidad, M Grace, Jaffe, Kaitlyn, Greene, Amanda, Denard Thomas, J, Kent, Madison, Morain, Stephanie, Wilborn, David, Scott Roberts, J
Format:	Artikel
Sprache:	eng
Schlagworte:	Academic publications Burden sharing Data Federal funding Federal government Genetic Research - ethics Genetic Research - legislation & jurisprudence Genomes Genomics Genomics - ethics Genomics - legislation & jurisprudence Governance Humans Information Dissemination - ethics Information Dissemination - legislation & jurisprudence Information sharing Intellectual property Privacy Qualitative research R&D Research & development Research & development expenditures Research Personnel United States
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Beschreibung
Zusammenfassung:	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.
ISSN:	1073-1105 1748-720X 1748-720X
DOI:	10.1017/jme.2024.123