Data sharing in stem cell translational science: policy statement by the International Stem Cell Forum Ethics Working Party.
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.
University Medical Center Utrecht, Julius Center, Department of Medical Humanities, Stratenum 6.131, PO Box 85500, 3508 GA Utrecht, Holland.
Annelien L
AL
Bredenoord
University Medical Center Utrecht, Julius Center, Department of Medical Humanities, Stratenum 6.131, PO Box 85500, 3508 GA Utrecht, Holland.
Menno
M
Mostert
McGill University, Centre of Genomics & Policy, 740, Avenue Dr. Penfield, Suite 5200, Montreal (Quebec), H3A 0G1, Canada.
Rosario
R
Isasi
McGill University, Centre of Genomics & Policy, 740, Avenue Dr. Penfield, Suite 5200, Montreal (Quebec), H3A 0G1, Canada.
Bartha M
BM
Knoppers
D000818:Animals; D026688:Bioethical Issues; D006801:Humans; D033181:Information Dissemination / Q000941:ethics*; D013234:Stem Cells; D057170:Translational Research, Biomedical / Q000941:ethics*
data sharing; ethics; policy; stem cells; translational science