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Lookup NU author(s): Dr Pauline McCormack, Emeritus Professor Simon WoodsORCiD, Florian Schaefer, Professor Hanns Lochmuller, Professor Mats Hansson
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND).
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.
Author(s): Mascalzoni D, Dove E, Rubinstein Y, Dawkins H, Kole A, McCormack P, Woods S, Riess O, Schaefer F, Lochmüller H, Knoppers B, Hansson M
Publication type: Article
Publication status: Published
Journal: European Journal of Human Genetics
Year: 2015
Volume: 23
Issue: 6
Pages: 721-728
Print publication date: 01/06/2015
Online publication date: 24/09/2014
Acceptance date: 20/08/2014
Date deposited: 15/06/2016
ISSN (print): 1018-4813
ISSN (electronic): 1476-5438
Publisher: Nature Publishing Group
URL: http://dx.doi.org/10.1038/ejhg.2014.197
DOI: 10.1038/ejhg.2014.197
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