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Oversight of EU medical data transfers: An administrative law perspective on cross-border biomedical research
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: Health and Technology, ISSN 2190-7188, E-ISSN 2190-7196, 1-12 p.Article in journal (Refereed) Published
Abstract [en]

The notionof privacy has longhad a central rolein human rights law, not least in connection to health and medicine.International, regional and national bodies have enacted a number of binding and non-binding document for physicians and researchers to adhere to, in order to protect the autonomy, dignity and privacy of patients and research subjects. With the development of new technologies, the right to privacy has gained a new perspective; the right to protection of personal data with in information and communication technologies. The right to data protection has been attributed an increasing  importance within EU law. Accordingly, the use of health data in medical research in general and in biobankrelated medical research in particular, has made data protection law highly relevant. In medical research involving biobanks, transferring human biological samples and/or individual health data is taking place on a daily basis.These transfers involve several oversight bodies, institutional review boards (IRBs), research ethics committees, or even data protection authorities. This article investigates the role of these national oversight bodies in the transfer of health data in cross border research, from an EU law point of view. A special focus is laid on transfer of health data for research purposes from the EU to the US, in the light of the recently enacted EU US Privacy Shield.The main question posed is how American oversight bodies for medical research can be expected to handle the increasingly strict EU requirements for the processing of health data in medical research review.

Place, publisher, year, edition, pages
2017. 1-12 p.
Keyword [en]
privacy, data protection, health, data transfer, EU, US, ethical review
National Category
Law (excluding Law and Society)
Research subject
Administrative Law
Identifiers
URN: urn:nbn:se:uu:diva-323943DOI: 10.1007/s12553-017-0182-6OAI: oai:DiVA.org:uu-323943DiVA: diva2:1107922
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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Reichel, Jane
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