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EU data transfer rules and African legal realities: is data exchange for biobank research realistic?
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Lund Univ, Fac Law, Lund, Sweden.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Stockholm Univ, Fac Law, Stockholm, Sweden.ORCID iD: 0000-0001-7509-4804
Aegis Advocates, Kampala, Uganda.
Univ Maryland, Baltimore, MD 21201 USA.
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2019 (English)In: International Data Privacy Law, ISSN 2044-3994, E-ISSN 2044-4001, Vol. 9, no 1, p. 30-48Article in journal (Refereed) Published
Abstract [en]

Key Points

  • To effectively collaborate in biobanking and build capacity in low and middle-income countries, data transfer from European Union (EU) Member States to states in Africa is crucial.

  • Although under the General Data Protection Regulation (GDPR) avenues for data transfer exist, the ones feasible for transcontinental data exchange for biobank research rely on EU enforcement which in essence means limited oversight possibilities and, consequently, considerable risks to the EU data subject’s privacy.

  • To ensure effective data protection for data subjects in biobanking, raising the data protection bar in data recipient countries is crucial. Although Kenya, Nigeria, South Africa, and Uganda have taken considerable steps towards developing data protection frameworks, only that of South Africa and Nigeria’s Protection of Personal Information Bill seem to be such to meet the protection level set out by the GDPR. The legislative initiatives in Kenya and Uganda require revisions to ensure that protection of privacy is not undermined when data are being sent to these countries.

  • Currently, considerable responsibility is placed in the hands of the legislatures in the countries of concern—and notably in Kenya, and Uganda—to set foundations for ending research and research integrity-harming practices. In Nigeria, these foundations are defined in the Protection of Personal Information Bill, but not adopted yet. South Africa, however, has taken a big step towards building routes for genuine biobank capacity-building in the country and collaboration in that regard.

Place, publisher, year, edition, pages
OXFORD UNIV PRESS , 2019. Vol. 9, no 1, p. 30-48
National Category
Law and Society
Identifiers
URN: urn:nbn:se:uu:diva-383208DOI: 10.1093/idpl/ipy010ISI: 000464940200004OAI: oai:DiVA.org:uu-383208DiVA, id: diva2:1317903
Funder
EU, Horizon 2020, 654404Available from: 2019-05-24 Created: 2019-05-24 Last updated: 2019-05-24Bibliographically approved

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Slokenberga, SantaReichel, Jane

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