Identifiability and privacy in pluripotent stem cell research.
Data sharing is an essential element of research; however, recent scientific and social developments have challenged conventional methods for protecting privacy. Here we provide guidance for determining data sharing thresholds for human pluripotent stem cell research aimed at a wide range of stakeholders, including research consortia, biorepositories, policy-makers, and funders.
Centre of Genomics and Policy, Faculty of Medicine, Department of Human Genetics, McGill University, Montreal, QC H3A 0G1, Canada. Electronic address: rosario.isasi@mcgill.ca.
Rosario
R
Isasi
Department of Biomedical Science, University of Sheffield, Sheffield S10 2TN, UK.
Peter W
PW
Andrews
Ottawa Hospital Research Institute and Department of Obstetrics and Gynecology, Faculty of Medicine, University of Ottawa, Ottawa, ON K1H 8L6, Canada.
Jay M
JM
Baltz
Julius Center, Department of Medical Ethics, University Medical Center Utrecht, Utrecht 3584 CX, The Netherlands.
Annelien L
AL
Bredenoord
School of Social and Community Medicine, University of Bristol, Bristol BS8 1TH, UK.
Paul
P
Burton
Regenerative Medicine Research, ICSM, National Health Research Institutes, Jhunan, Miaoli 35053, Taiwan.
Ing-Ming
IM
Chiu
NHGRI Bioethics Core, National Institutes of Health, Bethesda, MD 20892-1156, USA.
Sara Chandros
SC
Hull
Division of Intractable Diseases, Center for Biomedical Sciences, National Institute of Health and Korea Centers for Disease Control and Prevention, Chungcheongbuk-do 363-951, Republic of Korea.
Ji-Won
JW
Jung
Berlin-Brandenburg Center for Regenerative Therapies, Berlin 13353, Germany.
Andreas
A
Kurtz
California Institute for Regenerative Medicine, San Francisco, CA 94107, USA.
Geoffrey
G
Lomax
WiCell Research Institute, Madison, WI 53726, USA.
Tenneille
T
Ludwig
W. Maurice Young Centre for Applied Ethics, School of Population and Public Health, University of British Columbia, Vancouver, BC V6T 1Z2, Canada.
Michael
M
McDonald
National Health & Medical Research Council, Canberra ACT 2601, Australia.
Clive
C
Morris
A(∗)STAR, Genome Institute of Singapore, Singapore 138672, Singapore.
Huck Hui
HH
Ng
International Society for Stem Cell Research, Skokie, IL 60077, USA.
Heather
H
Rooke
Medical Biotechnology Division, Department of Biotechnology, Ministry of Science & Technology, Government of India, New Delhi 110-003, India.
Alka
A
Sharma
National Institute for Biological Standards and Control: A Centre of the MHRA, South Mimms, Hertfordshire UB8 3PH, UK.
Glyn N
GN
Stacey
Department of Sociology & Communications, School of Social Sciences, Brunel University, Kingston Lane, Uxbridge, Middlesex UB8 3PH, UK.
Clare
C
Williams
Shanghai Institute of Medical Genetics, Shanghai Stem Cell Institute, Shanghai 200025, People's Republic of China.
Fanyi
F
Zeng
Centre of Genomics and Policy, Faculty of Medicine, Department of Human Genetics, McGill University, Montreal, QC H3A 0G1, Canada.
Bartha Maria
BM
Knoppers
D006801:Humans; D039904:Pluripotent Stem Cells / Q000166:cytology*; D018907:Privacy; D057905:Stem Cell Research / Q000941:ethics* / Q000331:legislation & jurisprudence