Minds and Machines 29 (3):355-371 (2019)

Authors
Christoph Luetge
Technische Universität München
Burkhard Schafer
University of Edinburgh
1 more
Abstract
The European Medical Information Framework project, funded through the IMI programme, has designed and implemented a federated platform to connect health data from a variety of sources across Europe, to facilitate large scale clinical and life sciences research. It enables approved users to analyse securely multiple, diverse, data via a single portal, thereby mediating research opportunities across a large quantity of research data. EMIF developed a code of practice to ensure the privacy protection of data subjects, protect the interests of data sharing parties, comply with legislation and various organisational policies on data protection, uphold best practices in the protection of personal privacy and information governance, and eventually promote these best practices more widely. EMIF convened an Ethics Advisory Board, to provide feedback on its approach, platform, and the EcoP. The most important challenges the ECoP team faced were: how to define, control and monitor the purposes for which federated health data are used; the kinds of organisation that should be permitted to conduct permitted research; and how to monitor this. This manuscript explores those issues, offering the combined insights of the EAB and EMIF core ECoP team. For some issues, a consensus on how to approach them is proposed. For other issues, a singular approach may be premature but the challenges are summarised to help the community to debate the topic further. Arguably, the issues and their analyses have application beyond EMIF, to many research infrastructures connected to health data sources.
Keywords Data ethics  Medical ethics  Ethics of algorithms  Health ethics  GDPR
Categories (categorize this paper)
ISBN(s)
DOI 10.1007/s11023-018-9467-4
Options
Edit this record
Mark as duplicate
Export citation
Find it on Scholar
Request removal from index
Translate to english
Revision history

Download options

PhilArchive copy

 PhilArchive page | Other versions
External links

Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
Through your library

References found in this work BETA

No references found.

Add more references

Citations of this work BETA

Add more citations

Similar books and articles

The Ethics of Medical Data Donation.Jenny Krutzinna & Luciano Floridi (eds.) - 2019 - Springer International Publishing.
A Framework for the Ethical Impact Assessment of Information Technology.David Wright - 2011 - Ethics and Information Technology 13 (3):199-226.
Protecting Health Privacy Even When Privacy is Lost.T. J. Kasperbauer - 2020 - Journal of Medical Ethics 46 (11):768-772.
Should Internet Researchers Use Ill-Gotten Information?David Douglas - 2018 - Science and Engineering Ethics 24 (4):1221-1240.

Analytics

Added to PP index
2018-07-09

Total views
30 ( #363,404 of 2,448,710 )

Recent downloads (6 months)
13 ( #49,752 of 2,448,710 )

How can I increase my downloads?

Downloads

My notes