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, Hugh Dawkins, D. Taruscio, M. Posada, S. Woods

    Research output: Contribution to journalArticlepeer-review

    25 Citations (Scopus)

    Abstract

    © 2016 Macmillan Publishers Limited, part of Springer Nature.
    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.
    Original languageEnglish
    Pages (from-to)1553-1558
    JournalEuropean Journal of Human Genetics
    Volume24
    Issue number11
    Early online date25 May 2016
    DOIs
    Publication statusPublished - Nov 2016

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