Data sharing in stem cell translational science: Policy statement by the International Stem Cell Forum Ethics Working Party

Annelien L. Bredenoord*, Menno Mostert, Rosario Isasi, Bartha M. Knoppers

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

Data and sample sharing constitute a scientific and ethical imperative but need to be conducted in a responsible manner in order to protect individual interests as well as maintain public trust. In 2014, the Global Alliance for Genomics and Health (GA4GH) adopted a common Framework for Responsible Sharing of Genomic and Health-Related Data. The GA4GH Framework is applicable to data sharing in the stem cell field, however, interpretation is required so as to provide guidance for this specific context. In this paper, the International Stem Cell Forum Ethics Working Party discusses those principles that are specific to translational stem cell science, including engagement, data quality and safety, privacy, security and confidentiality, risk-benefit analysis and sustainability.

Original languageEnglish
Pages (from-to)857-861
Number of pages5
JournalRegenerative Medicine
Volume10
Issue number7
DOIs
Publication statusPublished - 1 Oct 2015

Keywords

  • data sharing
  • ethics
  • policy
  • stem cells
  • translational science

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