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

J Law Med Ethics. 2024;52(2):399-411. doi: 10.1017/jme.2024.123. Epub 2024 Oct 22.

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: Data Sharing; Genetic Testing; Genetics; National Institutes Of Health.

Publication types

  • Historical Article

MeSH terms

  • Genetic Research* / ethics
  • Genetic Research* / legislation & jurisprudence
  • Genomics / ethics
  • Genomics / legislation & jurisprudence
  • Humans
  • Information Dissemination* / ethics
  • Information Dissemination* / legislation & jurisprudence
  • Research Personnel
  • United States