Modern health data practices come with many practical uncertainties. In this paper, I argue that data subjects’ trust in the institutions and organizations that control their data, and their ability to know their own moral obligations in relation to their data, are undermined by significant uncertainties regarding the what, how, and who of mass data collection and analysis. I conclude by considering how proposals for managing situations of high uncertainty might be applied to this problem. These emphasize increasing organizational flexibility, knowledge, and capacity, and reducing hazard.
|Title of host publication||The Ethics of Medical Data Donation|
|Editors||J Krutzinna, L Floridi|
|Place of Publication||Cham|
|Number of pages||20|
|Publication status||Published - 2019|
|Name||Philosophical Studies Series|
Bibliographical noteFunding Information:
I would like to acknowledge the useful feedback I received on earlier versions of this paper from participants at workshops in Eindhoven, in Warwick, and at the Oxford Internet Institute. This research is affiliated with the Netherlands Organisation for Scientific Research Responsible Innovation (NWO-MVI) project ?Mobile Support Systems for Behaviour Change,? project number 100-23-616.
© The Author(s) 2019.
Copyright 2021 Elsevier B.V., All rights reserved.
- Data professionalism
- Ethics of data donation
- Opacity of algorithms
- Practical uncertainty
- Systemic oversight
- Value-based health care