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Legal and ethical governance of intercontinental biobanking: Some experiences from a H2020 project
Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
Karolinska institutet.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.ORCID iD: 0000-0001-7509-4804
2017 (English)In: Förvaltningsrättslig Tidskrift, ISSN 0015-8585, no 1, 169-192 p.Article in journal (Refereed) Published
Abstract [en]

Biobanks exist today on every continental though they have evolved differently in different parts of the world. The African States have been involved in biobank research for a considerable time but for decades large volumes of data and samples have been transferred outside the continent to developed countries for their storage and eventual further use, thus affecting the capacity-building and development for researchers in Africa. Currently, there are ongoing projects to build biobank research capacity within the regions where they are at an early developmental stage and collaborate transnationally in that regard. One of them is B3Africa, an EU-funded project that aims to facilitate collaboration between selected EU Member States and the African States and enhance mutual data and sample exchange between the EU and African States. Within the project, an informatics platform, the eB3Kit, is being developed. The platform integrates available open-source software, services and tools for biobanking and bioinformatics. Further, an ethical and legal framework for collaboration is being drafted that may bridge biobank research activities in the EU Member States and the African States. This article focuses on the latter, the ethical and legal framework.

Place, publisher, year, edition, pages
2017. no 1, 169-192 p.
Keyword [en]
intercontinental biobanking data protection transfer
National Category
Law (excluding Law and Society)
Research subject
Administrative Law
Identifiers
URN: urn:nbn:se:uu:diva-323944OAI: oai:DiVA.org:uu-323944DiVA: diva2:1107924
Projects
B3Africa
Funder
EU, Horizon 2020, 654404
Available from: 2017-06-11 Created: 2017-06-11 Last updated: 2017-06-12Bibliographically approved

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