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Enabling Posthumous Medical Data Donation: An Appeal for the Ethical Utilisation of Personal Health Data

  • Jenny Krutzinna
  • Mariarosaria Taddeo
  • Luciano Floridi
Original Paper

Abstract

This article argues that personal medical data should be made available for scientific research, by enabling and encouraging individuals to donate their medical records once deceased, similar to the way in which they can already donate organs or bodies. This research is part of a project on posthumous medical data donation developed by the Digital Ethics Lab at the Oxford Internet Institute at the University of Oxford. Ten arguments are provided to support the need to foster posthumous medical data donation. Two major risks are also identified—harm to others, and lack of control over the use of data—which could follow from unregulated donation of medical data. The argument that record-based medical research should proceed without the need to secure informed consent is rejected, and instead a voluntary and participatory approach to using personal medical data should be followed. The analysis concludes by stressing the need to develop an ethical code for data donation to minimise the risks, and offers five foundational principles for ethical medical data donation suggested as a draft code.

Keywords

Data donation Medical data ethics Ethical code Data philanthropy 

Notes

Acknowledgements

Floridi’s and Taddeo’s contributions to this paper have been funded as part of the Privacy and Trust Stream—Social lead of the PETRAS Internet of Things research hub. PETRAS is funded by the Engineering and Physical Sciences Research Council (EPSRC), grant agreement no. EP/N023013/1. Krutzinna’s and Floridi’s contributions have been funded by a Microsoft research grant. We express our gratitude to Microsoft Research for funding the research that led to the elaboration of this document. We are also extremely grateful to the participants of two workshops on the Ethics of Data Donation, held by the Digital Ethics Lab at the Oxford Internet Institute, University of Oxford, for their valuable contribution to the preparation of this document.

Funding

Funded by Microsoft Research.

Compliance with Ethical Standards

Conflict of interest

All authors declare no conflict of interest.

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Copyright information

© Springer Nature B.V. 2018

Authors and Affiliations

  1. 1.Oxford Internet InstituteUniversity of OxfordOxfordUK
  2. 2.The Alan Turing InstituteLondonUK

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