Note: This article is based on work from European Cooperation in Science and Technology (COST) Action IS1303—Citizen's Health Through Public–Private Initiatives: Public Health, Market and Ethical Perspectives—supported by COST (
https://www.cost.eu).
Grant Support: Ms. Bentzen receives funding from the Research Council of Norway under the project Legal Regulation of Information Processing Relating to Personalized Cancer Medicine (grant 238999). Drs. Mascalzoni, Bygrave, and Kaye and Ms. Bentzen are supported by NordForsk (grant 81105) and the Economic and Social Research Council (part of United Kingdom Research and Innovation) under the project Governance of Health Data in Cyberspace. Dr. Budin-Ljøsne receives funding from Biobank Norway, which is funded by the Research Council of Norway (grant 245464). Dr. Mayrhofer receives funding from ADOPT BBMRI-ERIC (GA 676550). Mr. O'Brien receives funding from the U.S. National Science Foundation (grant CNS-1237235). Dr. Rakić receives funding from the Serbian Ministry of Education, Science and Technological Development (grant 41004). Dr. Shabani is supported by an FWO postdoctoral fellowship.
Corresponding Author: Jane Kaye, DPhil, HeLEX Centre for Health, Law and Emerging Technologies, Nuffield Department of Population Health, University of Oxford, Ewert House, Ewert Place, Summertown, Oxford OX2 7DD, United Kingdom; e-mail,
[email protected].
Current Author Addresses: Drs. Mascalzoni, Fuchsberger, Meraviglia, Pattaro, Pramstaller, and Rossini: Institute for Biomedicine, Eurac Research, Via Galvani 31, 39100 Bolzano, Italy.
Ms. Bentzen and Dr. Bygrave: Norwegian Research Center for Computers and Law, Department of Private Law, Faculty of Law, University of Oslo, P.O. Box 6706, St. Olavs plass, 0130 Oslo, Norway.
Dr. Budin-Ljøsne, Norwegian Institute of Public Health, P.O. Box 222, Skøyen, 0213 Oslo, Norway.
Dr. Bell: Melbourne Law School, 185 Pelham Street, The University of Melbourne, Victoria, 3010, Australia.
Dr. Dove: School of Law, University of Edinburgh, LG.12, Old College, South Bridge, Edinburgh EH8 9YL, United Kingdom.
Drs. Fuchsberger, Meraviglia, Pattaro, Pramstaller, and Rossini: Institute for Biomedicine, Eurac Research, Via Galvani 31, 39100 Bolzano, Italy.
Dr. Hveem: HUNT Research Center, Forskningsvegen 2, 7600 Levanger, Norway.
Dr. Mayrhofer: BBMRI-ERIC, Neue Stiftingtalstrasse 2/B/6, 8010 Graz, Austria.
Mr. O'Brien: Berkman Klein Center for Internet and Society, Harvard University, 23 Everett Street, 2nd Floor, Cambridge, MA 02138.
Dr. Rakić: Center for the Study of Bioethics, Institute for Social Sciences, University of Belgrade, Kraljice Natalije 45, P.O. Box 605, 11000 Beograd, Serbia.
Dr. Shabani: Center for Biomedical Ethics and Law, University of Leuven, Kapucijnenvoer 35, 3000 Leuven, Belgium.
Dr. Svantesson: Faculty of Law, Bond University, Gold Coast, Queensland, 4229, Australia.
Dr. Tomasi: Faculty of Law, University of Trento, Via Verdi 53, 38100, Trento, Italy.
Dr. Ursin: K. G. Jebsen Center for Genetic Epidemiology, Department of Public Health and Nursing, Norwegian University of Science and Technology, Håkon Jarls gate 11, 7030 Trondheim, Norway.
Dr. Wjst: Helmholtz Zentrum München, National Research Centre for Environmental Health, Institute of Lung Biology and Disease, D-85764 Neuherberg, Germany.
Dr. Kaye: HeLEX Centre for Health, Law and Emerging Technologies, Nuffield Department of Population Health, University of Oxford, Ewert House, Ewert Place, Summertown, Oxford OX2 7DD, United Kingdom.
Author Contributions: Conception and design: D. Mascalzoni, H.B. Bentzen, I. Budin-Ljøsne.
Analysis and interpretation of the data: D. Mascalzoni, H.B. Bentzen, I. Budin-Ljøsne, L.A. Bygrave, J. Bell, E.S. Dove, K. Hveem, M.T. Mayrhofer, D.R. O'Brien, C. Pattaro, V. Rakić, M. Shabani, D.J.B. Svantesson, M. Tomasi, L. Ursin, M. Wjst, J. Kaye.
Drafting of the article: D. Mascalzoni, H.B. Bentzen, I. Budin-Ljøsne, L.A. Bygrave, J. Bell, E.S. Dove, K. Hveem.
Critical revision for important intellectual content: D. Mascalzoni, H.B. Bentzen, I. Budin-Ljøsne, L.A. Bygrave, J. Bell, C. Fuchsberger, K. Hveem, M.T. Mayrhofer, V. Meraviglia, C. Pattaro, P.P. Pramstaller, V. Rakić, A. Rossini, M. Shabani, M. Tomasi, M. Wjst, J. Kaye.
Final approval of the article: D. Mascalzoni, H.B. Bentzen, I. Budin-Ljøsne, L.A. Bygrave, J. Bell, E.S. Dove, C. Fuchsberger, K. Hveem, M.T. Mayrhofer, V. Meraviglia, D.R. O'Brien, C. Pattaro, P.P. Pramstaller, V. Rakić, A. Rossini, M. Shabani, D.J.B. Svantesson, M. Tomasi, L. Ursin, M. Wjst, J. Kaye.
Obtaining of funding: D. Mascalzoni, H.B. Bentzen, I. Budin-Ljøsne.
Administrative, technical, or logistic support: D. Mascalzoni, H.B. Bentzen, I. Budin-Ljøsne.
Collection and assembly of data: D. Mascalzoni, H.B. Bentzen, I. Budin-Ljøsne, L.A. Bygrave, J. Bell, E.S. Dove, K. Hveem, M.T. Mayrhofer, D.R. O'Brien, C. Pattaro, V. Rakić, M. Shabani, D.J.B. Svantesson, M. Tomasi, L. Ursin, M. Wjst, J. Kaye.
This article was published at
Annals.org on 19 February 2019.
* Dr. Mascalzoni and Ms. Bentzen share first authorship.
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