"一把双刃剑"：基因组数据管理简史》和《基因研究人员对数据共享的看法》。

IF 1.6 4区哲学 Q2 ETHICS

Journal of Law Medicine & Ethics Pub Date : 2024-01-01 Epub Date: 2024-10-22 DOI:10.1017/jme.2024.123

Kayte Spector-Bagdady, Kerry A Ryan, Amy L McGuire, Chris D Krenz, M Grace Trinidad, Kaitlyn Jaffe, Amanda Greene, J Denard Thomas, Madison Kent, Stephanie Morain, David Wilborn, J Scott Roberts

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引用次数: 0

摘要

过去 20 年来，联邦政府不断扩展和完善数据共享政策，但复杂的挑战依然存在。我们对美国学术基因研究人员（n=23）的访谈发现，数据共享的负担、翻译、行业限制和同意结构仍是主要的管理挑战。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

查看原文本刊更多论文

"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 remain major governance challenges.

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来源期刊

Journal of Law Medicine & Ethics 医学-医学：法

CiteScore

2.90

自引率

4.80%

发文量

审稿时长

6-12 weeks

期刊介绍： Material published in The Journal of Law, Medicine & Ethics (JLME) contributes to the educational mission of The American Society of Law, Medicine & Ethics, covering public health, health disparities, patient safety and quality of care, and biomedical science and research. It provides articles on such timely topics as health care quality and access, managed care, pain relief, genetics, child/maternal health, reproductive health, informed consent, assisted dying, ethics committees, HIV/AIDS, and public health. Symposium issues review significant policy developments, health law court decisions, and books.