Philosophical Studies Series

Volume 137

Editor-in-Chief Luciano Floridi, University of Oxford, Oxford Internet Institute, United Kingdom Mariarosaria Taddeo, University of Oxford, Oxford Internet Institute, United Kingdom

Executive Editorial Board Patrick Allo, Vrije Universiteit Brussel, Belgium Massimo Durante, Università degli Studi di Torino, Italy Phyllis Illari, University College London, United Kingdom Shannon Vallor, Santa Clara University

Board of Consulting Editors Lynne Rudder Baker, University of Massachusetts at Amherst Stewart Cohen, Arizona State University, Tempe Radu Bogdan, Tulane University Marian David, University of Notre Dame John M. Fischer, University of California at Riverside Keith Lehrer, University of Arizona, Tucson Denise Meyerson, Macquarie University François Recanati, Institut Jean-Nicod, EHESS, Paris Mark Sainsbury, University of Texas at Austin Barry Smith, State University of New York at Buffalo Nicholas D. Smith, Lewis & Clark College Linda Zagzebski, University of Oklahoma More information about this series at http://www.springer.com/series/6459 Jenny Krutzinna • Luciano Floridi Editors

The Ethics of Medical Data Donation Editors Jenny Krutzinna Luciano Floridi Department of Administration and Oxford Internet Institute Organization Theory University of Oxford University of Bergen Oxford, UK Bergen, Norway The Alan Turing Institute London, UK

ISSN 0921-8599 ISSN 2542-8349 (electronic) Philosophical Studies Series ISBN 978-3-030-04362-9 ISBN 978-3-030-04363-6 (eBook) https://doi.org/10.1007/978-3-030-04363-6

Library of Congress Control Number: 2018966803

© The Editor(s) (if applicable) and The Author(s) 2019. This book is an open access publication. Open Access This book is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence and indicate if changes were made. The images or other third party material in this book are included in the book’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the book's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, express or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland Preface and Acknowledgments

New medical data is generated every second, adding to the source of potential “raw material” required for generating innovative and groundbreaking medical insights and expanding knowledge about health and well-being. For the first time in history, technologies exist that enable rapid and large-scale analysis of collected data, bring- ing the possibility of personalizing medicine within reach. Such positive prospects are countered by serious ethical, social, and legal challenges. Procedures for access- ing medical data for research purposes, as well as for the reuse of medical data from clinical trials or studies, are in place and include safeguards to protect individual rights. However, no comprehensive scheme to donate one’s medical data posthu- mously exists, with the consequence of depriving individuals of the opportunity to act according to their moral values and preventing valuable datasets from being used in scientific research for the promotion of the public good. While the debate around the use of big data in medicine is far from new, this volume is the first to address the ethical issues with regard to the use of medical data after death. It brings together academic experts from ethics, law, and medical sciences to address the challenges associated with medical data donation. It is the result of a project devel- oped at the Digital Ethics Lab at the Oxford Internet Institute, University of Oxford, and funded by Microsoft Research. We wish to thank the participants of the two workshops held in Oxford in October 2017 and April 2018 for their contributions to the discussion. Their input has been vital in developing the ideas for this volume and beyond. We would also like to thank the numerous peer reviewers that helped with the preparation of the individual chapters. Finally, we are grateful to Microsoft Research for the generous support of this project, without which it would not have been possible.

Bergen, Norway Jenny Krutzinna Oxford, UK Luciano Floridi London, UK

v Contents

1 Ethical Medical Data Donation: A Pressing Issue �� 1 Jenny Krutzinna and Luciano Floridi

Part I Conceptualising the Ethics of Medical Data Donation 2 Data Donation: How to Resist the iLeviathan �� 9 Barbara Prainsack 3 Data Donations as Exercises of Sovereignty �� 23 Patrik Hummel, Matthias Braun, and Peter Dabrock 4 The Ethics of Uncertainty for Data Subjects �� 55 Philip J. Nickel 5 Incongruities and Dilemmas in Data Donation: Juggling Our 1s and 0s �� 75 Kerina H. Jones

Part II Governance and Regulation of Medical Data Donation 6 Posthumous Medical Data Donation: The Case for a Legal Framework �� 97 Edina Harbinja 7 Medical Data Donation, Consent and the Public Interest After Death: A Gateway to Posthumous Data Use �� 115 Annie Sorbie

Part III Implementing Ethical Medical Data Donation 8 The Personal Data Is Political �� 133 Bastian Greshake Tzovaras and Athina Tzovara

vii viii Contents

9 Personal Data Cooperatives – A New Data Governance Framework for Data Donations and Precision Health �� 141 Ernst Hafen 10 Defining Data Donation After Death: Metadata, Families, Directives, Guardians and the Route to Big Consent �� 151 David M. Shaw

Part IV An Ethical Code for Posthumous Medical Data Donation 11 Enabling Posthumous Medical Data Donation: A Plea for the Ethical Utilisation of Personal Health Data �� 163 Jenny Krutzinna, Mariarosaria Taddeo, and Luciano Floridi 12 An Ethical Code for Posthumous Medical Data Donation �� 181 Jenny Krutzinna, Mariarosaria Taddeo, and Luciano Floridi

Index �� 197 Contributors

Matthias Braun Department of Theology, Systematic Theology II (Ethics), Friedrich-Alexander-Universität Erlangen-Nürnberg, Erlangen, Germany Peter Dabrock Department of Theology, Systematic Theology II (Ethics), Friedrich-Alexander-Universität Erlangen-Nürnberg, Erlangen, Germany Luciano Floridi Oxford Internet Institute, University of Oxford, Oxford, UK The Alan Turing Institute, London, UK Bastian Greshake Tzovaras Lawrence Berkeley National Laboratory, Berkeley, CA, USA Open Humans Foundation, Sanford, NC, USA Ernst Hafen Institute of Molecular Systems Biology, ETH Zürich, Zürich, Switzerland MIDATA Cooperative, Zürich, Switzerland Edina Harbinja Aston University, Birmingham, UK Patrik Hummel Department of Theology, Systematic Theology II (Ethics), Friedrich-Alexander-Universität Erlangen-Nürnberg, Erlangen, Germany Kerina H. Jones Population Data Science, Swansea University Medical School, Swansea, UK Jenny Krutzinna Department of Administration and Organization Theory, University of Bergen, Bergen, Norway Philip J. Nickel Eindhoven University of Technology, Eindhoven, The Netherlands Barbara Prainsack Department of Political Science, University of Vienna, Vienna, Austria Department of Global Health & Social Medicine, King’s College London, London, UK

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David M. Shaw Institute for Biomedical Ethics, University of Basel, Basel, Switzerland Care and Public Health Research Institute, Maastricht University, Maastricht, The Netherlands Annie Sorbie School of Law, University of Edinburgh, Edinburgh, UK Mason Institute for Medicine, Life Sciences and the Law, Edinburgh, UK Mariarosaria Taddeo Oxford Internet Institute, University of Oxford, Oxford, UK The Alan Turing Institute, London, UK Athina Tzovara Helen Wills Neuroscience Institute, University of California, Berkeley, CA, USA