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Cell Stem Cell. 2014 Apr 3;14(4):427-30. doi: 10.1016/j.stem.2014.03.014.

Identifiability and privacy in pluripotent stem cell research.

Author information

1
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.
2
Department of Biomedical Science, University of Sheffield, Sheffield S10 2TN, UK.
3
Ottawa Hospital Research Institute and Department of Obstetrics and Gynecology, Faculty of Medicine, University of Ottawa, Ottawa, ON K1H 8L6, Canada.
4
Julius Center, Department of Medical Ethics, University Medical Center Utrecht, Utrecht 3584 CX, The Netherlands.
5
School of Social and Community Medicine, University of Bristol, Bristol BS8 1TH, UK.
6
Regenerative Medicine Research, ICSM, National Health Research Institutes, Jhunan, Miaoli 35053, Taiwan.
7
NHGRI Bioethics Core, National Institutes of Health, Bethesda, MD 20892-1156, USA.
8
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.
9
Berlin-Brandenburg Center for Regenerative Therapies, Berlin 13353, Germany.
10
California Institute for Regenerative Medicine, San Francisco, CA 94107, USA.
11
WiCell Research Institute, Madison, WI 53726, USA.
12
W. Maurice Young Centre for Applied Ethics, School of Population and Public Health, University of British Columbia, Vancouver, BC V6T 1Z2, Canada.
13
National Health & Medical Research Council, Canberra ACT 2601, Australia.
14
A(∗)STAR, Genome Institute of Singapore, Singapore 138672, Singapore.
15
International Society for Stem Cell Research, Skokie, IL 60077, USA.
16
Medical Biotechnology Division, Department of Biotechnology, Ministry of Science & Technology, Government of India, New Delhi 110-003, India.
17
National Institute for Biological Standards and Control: A Centre of the MHRA, South Mimms, Hertfordshire UB8 3PH, UK.
18
Department of Sociology & Communications, School of Social Sciences, Brunel University, Kingston Lane, Uxbridge, Middlesex UB8 3PH, UK.
19
Shanghai Institute of Medical Genetics, Shanghai Stem Cell Institute, Shanghai 200025, People's Republic of China.
20
Centre of Genomics and Policy, Faculty of Medicine, Department of Human Genetics, McGill University, Montreal, QC H3A 0G1, Canada.

Abstract

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.

PMID:
24702994
PMCID:
PMC4815907
DOI:
10.1016/j.stem.2014.03.014
[Indexed for MEDLINE]
Free PMC Article

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