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    International Charter of principles for sharing bio-specimens and data

    Access Status
    Open access via publisher
    Authors
    Mascalzoni, D.
    Dove, E.
    Rubinstein, Y.
    Dawkins, Hugh
    Kole, A.
    Mccormack, P.
    Woods, S.
    Riess, O.
    Schaefer, F.
    Lochmüller, H.
    Knoppers, B.
    Hansson, M.
    Date
    2015
    Type
    Journal Article
    
    Metadata
    Show full item record
    Citation
    Mascalzoni, D. and Dove, E. and Rubinstein, Y. and Dawkins, H. and Kole, A. and Mccormack, P. and Woods, S. et al. 2015. International Charter of principles for sharing bio-specimens and data. European Journal of Human Genetics. 23 (6): pp. 721-728.
    Source Title
    European Journal of Human Genetics
    DOI
    10.1038/ejhg.2014.197
    ISSN
    1018-4813
    School
    Centre for Population Health Research
    URI
    http://hdl.handle.net/20.500.11937/41914
    Collection
    • Curtin Research Publications
    Abstract

    © 2015 Macmillan Publishers Limited. All rights reserved. There is a growing international agreement on the need to provide greater access to research data and bio-specimen collections to optimize their long-term value and exploit their potential for health discovery and validation. This is especially evident for rare disease research. Currently, the rising value of data and bio-specimen collections does not correspond with an equal increase in data/sample-sharing and data/sample access. Contradictory legal and ethical frameworks across national borders are obstacles to effective sharing: more specifically, the absence of an integrated model proves to be a major logistical obstruction. The Charter intends to amend the obstacle by providing both the ethical foundations on which data sharing should be based, as well as a general Material and Data Transfer Agreement (MTA/DTA). This Charter is the result of a careful negotiation of different stakeholders' interest and is built on earlier consensus documents and position statements, which provided the general international legal framework. Further to this, the Charter provides tools that may help accelerate sharing. The Charter has been formulated to serve as an enabling tool for effective and transparent data and bio-specimen sharing and the general MTA/DTA constitutes a mechanism to ensure uniformity of access across projects and countries, and may be regarded as a consistent basic agreement for addressing data and material sharing globally. The Charter is forward looking in terms of emerging issues from the perspective of a multi-stakeholder group, and where possible, provides strategies that may address these issues.

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