This is a preview of subscription content, access via your institution
Relevant articles
Open Access articles citing this article.
-
Mapping the Apps: Ethical and Legal Issues with Crowdsourced Smartphone Data using mHealth Applications
Asian Bioethics Review Open Access 18 June 2024
-
“Who is watching the watchdog?”: ethical perspectives of sharing health-related data for precision medicine in Singapore
BMC Medical Ethics Open Access 19 November 2020
-
Responsible data sharing in international health research: a systematic review of principles and norms
BMC Medical Ethics Open Access 28 March 2019
Access options
Subscription info for Japanese customers
We have a dedicated website for our Japanese customers. Please go to natureasia.com to subscribe to this journal.
Buy this article
- Purchase on SpringerLink
- Instant access to full article PDF
Prices may be subject to local taxes which are calculated during checkout
References
Knoppers, B.M. & Saginur, M. Nat. Biotechnol. 23, 925–927 (2005).
Solomon, S. in Clinical Genomics (eds. Kulkarni, S. & Pfeifer, J.) 403–434 (Elsevier, 2015).
Ritter, S. J. Clin. Trials 5, e120 (2015).
Zang, J., Dummit, K., Graves, J., Lisker, P. & Sweeney, L. Technology Science http://techscience.org/a/2015103001 (2015).
Stein, L.D., Knoppers, B.M., Campbell, P., Getz, G. & Korbel, J.O. Nature 523, 149–151 (2015).
Ohm, P. UCLA Law Rev. 57, 1701 (2010).
Barocas, S. & Nissenbaum, H. in Privacy, Big Data, and the Public Good: Frameworks for Engagement (eds. Lane, J., Stodden, V., Bender, S. & Nissenbaum, H.) 44–75 (Cambridge Univ. Press, 2014).
Cai, R. et al. Bioinformatics 31, 1701–1707 (2015).
International Conference on Harmonisation of Technical Requirements for Registration of Pharmaceuticals for Human Use. Harmonised Guideline on Genomic Sampling and Management of Genomic Data. Draft Efficacy Guideline E18 (2015). http://www.ich.org/fileadmin/Public_Web_Site/ICH_Products/Guidelines/Efficacy/E18_Step2.pdf
Article 29 Working Party. Statement on the Role of a Risk-based Approach in Data Protection Legal Frameworks (2014). http://ec.europa.eu/justice/data-protection/article-29/documentation/opinion-recommendation/files/2014/wp218_en.pdf
Cate, F.H., Cullen, P. & Mayer-Schönberger, V. Data Protection Principles for the 21st Century: Revising the 1980 OECD Guidelines (2014). https://www.oii.ox.ac.uk/archive/downloads/publications/Data_Protection_Principles_for_the_21st_Century.pdf
International Standards Organization. Technical Specification 25237. Health Informatics — Pseudonimization (International Standards Organization, 2008).
El Emam, K. & Arbuckle, L. Anonymizing Health Data (O'Reilly, Sebastopol, California, USA, 2014).
Council of the European Union. General Data Protection Regulation, first reading, 15039/15 (Brussels, 2015).
International Conference on Harmonisation of Technical Requirements for Registration of Pharmaceuticals for Human Use. Definitions for Genomic Biomarkers, Pharmacogenetics, Genomic Data and Sample Coding Categories. Efficiency Guideline E15 (2007). http://www.ich.org/fileadmin/Public_Web_Site/ICH_Products/Guidelines/Efficacy/E15/Step4/E15_Guideline.pdf
Revised Statutes of Alberta, as amended (Queen's Printer, 2000).
Information Commissioner's Office (UK). Anonymisation: Managing Data Protection Risk, Code of Practice (circa 2012). https://ico.org.uk/media/1061/anonymisation-code.pdf
Global Alliance for Genomics and Health. Privacy and Security Policy (2015). https://genomicsandhealth.org/work-products-demonstration-projects/privacy-and-security-policy
Global Alliance for Genomics & Health. Data Sharing Lexicon (2015). http://genomicsandhealth.org/work-products-demonstration-projects/data-sharing-lexicon
United States Code of Federal Regulations. Title 45: Public Welfare, Part 164: Security and Privacy. Office of the Federal Register, National Archives and Records Service, 1996
Homer, N. et al. PLoS Genet. 4, 1000167 (2008).
Lin, Z., Owen, A.B. & Altman, R.B. Science 305, 183 (2004).
Malin, B. & Sweeney, L. J. Biomed. Inform. 37, 179–192 (2004).
Schadt, E.E., Woo, S. & Hao, K. Nat. Genet. 44, 603–608 (2012).
Gymrek, M., McGuire, A.L., Golan, D., Halperin, E. & Erlich, Y. Science 339, 321–324 (2013).
Nietfeld, J.J. EMBO Rep. 8, 518 (2007).
Article 29 Working Party. Opinion 05/2014 on Anonymisation Techniques (2014). http://ec.europa.eu/justice/data-protection/article-29/documentation/opinion-recommendation/files/2014/wp216_en.pdf
Article 29 Working Party. Opinion 04/2007 on the Concept of Personal Data (2007). http://ec.europa.eu/justice/data-protection/article-29/documentation/opinion-recommendation/files/2007/wp136_en.pdf
Institute of Medicine. Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health through Research (National Academies, Washington, DC, 2009).
Acknowledgements
The authors acknowledge funding from the Cancer Genome Collaboratory and from Can-SHARE.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Competing interests
The authors declare no competing financial interests.
Rights and permissions
About this article
Cite this article
Phillips, M., Knoppers, B. The discombobulation of de-identification. Nat Biotechnol 34, 1102–1103 (2016). https://doi.org/10.1038/nbt.3696
Published:
Issue Date:
DOI: https://doi.org/10.1038/nbt.3696
This article is cited by
-
Mapping the Apps: Ethical and Legal Issues with Crowdsourced Smartphone Data using mHealth Applications
Asian Bioethics Review (2024)
-
“Who is watching the watchdog?”: ethical perspectives of sharing health-related data for precision medicine in Singapore
BMC Medical Ethics (2020)
-
Genomics: data sharing needs an international code of conduct
Nature (2020)
-
Responsible data sharing in international health research: a systematic review of principles and norms
BMC Medical Ethics (2019)
-
Rules for processing genetic data for research purposes in view of the new EU General Data Protection Regulation
European Journal of Human Genetics (2018)