International charter of principles for sharing bio-specimens and data

Deborah Mascalzoni, Edward S. Dove, Yaffa Rubinstein, Hugh J.S. Dawkins, Anna Kole, Pauline McCormack, Simon Woods, Olaf Riess, Franz Schaefer, Hanns Lochmüller, Bartha M. Knoppers, Mats Hansson

    Research output: Chapter in Book/Conference paperChapter

    Abstract

    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.

    Original languageEnglish
    Title of host publicationGetting to Good
    Subtitle of host publicationResearch Integrity in the Biomedical Sciences
    EditorsA.L Caplan, B.K Redman
    Place of PublicationSwitzerland
    PublisherSpringer International Publishing AG
    Pages530-538
    Number of pages9
    ISBN (Electronic)9783319513584
    ISBN (Print)9783319513577
    DOIs
    Publication statusPublished - 23 Jul 2018

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