The risk of re-identification versus the need to identify individuals in rare disease research

M.G. Hansson; H. Lochmüller; O. Riess; F. Schaefer; M. Orth; Y. Rubinstein; C. Molster; H. Dawkins; D. Taruscio; M. Posada; S. Woods

doi:10.1038/ejhg.2016.52

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The risk of re-identification versus the need to identify individuals in rare disease research

Journal article

Peer reviewed

The risk of re-identification versus the need to identify individuals in rare disease research

M.G. Hansson, H. Lochmüller, O. Riess, F. Schaefer, M. Orth, Y. Rubinstein, C. Molster, H. Dawkins, D. Taruscio, M. Posada, …

European Journal of Human Genetics, Vol.24(11), pp.1553-1558

2016

DOI: https://doi.org/10.1038/ejhg.2016.52

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Abstract

There is a growing concern in the ethics literature and among policy makers that de-identification or coding of personal data and biospecimens is not sufficient for protecting research subjects from privacy invasions and possible breaches of confidentiality due to the possibility of unauthorized re-identification. At the same time, there is a need in medical science to be able to identify individual patients. In particular for rare disease research there is a special and well-documented need for research collaboration so that data and biosamples from multiple independent studies can be shared across borders. In this article, we identify the needs and arguments related to de-identification and re-identification of patients and research subjects and suggest how the different needs may be balanced within a framework of using unique encrypted identifiers.

Details

Title: The risk of re-identification versus the need to identify individuals in rare disease research
Authors/Creators: M.G. Hansson (Author/Creator) - Uppsala University
H. Lochmüller (Author/Creator) - Newcastle University
O. Riess (Author/Creator) - University of Tübingen
F. Schaefer (Author/Creator) - Division of Pediatric Nephrology, Heidelberg University Center for Pediatric and Adolescent Medicine, Heidelberg, Germany.
M. Orth (Author/Creator) - University Hospital Ulm
Y. Rubinstein (Author/Creator) - National Center for Advancing Translational Sciences
C. Molster (Author/Creator) - Government of Western Australia
H. Dawkins (Author/Creator) - Government of Western Australia
D. Taruscio (Author/Creator) - Istituto Superiore di Sanità
M. Posada (Author/Creator)
S. Woods (Author/Creator) - Newcastle University
Publication Details: European Journal of Human Genetics, Vol.24(11), pp.1553-1558
Publisher: Nature Publishing Group
Identifiers: 991005540964107891
Copyright: © 2016 European Society of Human Genetics
Murdoch Affiliation: Centre for Comparative Genomics
Language: English
Resource Type: Journal article

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Collaboration types: Domestic collaboration; International collaboration
Citation topics: 1 Clinical & Life Sciences; 1.155 Medical Ethics; 1.155.598 Clinical Research Ethics
Web Of Science research areas: Biochemistry & Molecular Biology; Genetics & Heredity
ESI research areas: Molecular Biology & Genetics