Identifiability and privacy in pluripotent stem cell research

Rosario Isasi; Peter W Andrews; Jay M Baltz; Annelien L Bredenoord; Paul Burton; Ing-Ming Chiu; Sara Chandros Hull; Ji-Won Jung; Andreas Kurtz; Geoffrey Lomax; Tenneille Ludwig; Michael McDonald; Clive Morris; Huck Hui Ng; Heather Rooke; Alka Sharma; Glyn N Stacey; Clare Williams; Fanyi Zeng; Bartha Maria Knoppers

doi:10.1016/j.stem.2014.03.014

Identifiability and privacy in pluripotent stem cell research

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

Authors

Rosario Isasi¹, Peter W Andrews², Jay M Baltz³, Annelien L Bredenoord⁴, Paul Burton⁵, Ing-Ming Chiu⁶, Sara Chandros Hull⁷, Ji-Won Jung⁸, Andreas Kurtz⁹, Geoffrey Lomax¹⁰, Tenneille Ludwig¹¹, Michael McDonald¹², Clive Morris¹³, Huck Hui Ng¹⁴, Heather Rooke¹⁵, Alka Sharma¹⁶, Glyn N Stacey¹⁷, Clare Williams¹⁸, Fanyi Zeng¹⁹, Bartha Maria Knoppers²⁰

Affiliations

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.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Humans
Pluripotent Stem Cells / cytology*
Privacy*
Stem Cell Research / ethics*
Stem Cell Research / legislation & jurisprudence

Abstract

Publication types

MeSH terms

Grants and funding