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Published on: September 20, 2018
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How should we think about clinical data ownership?
1Department of Primary Health Care and General Practice and the Bioethics Center, Otago University, Wellington, New Zealand angela.ballantyne@otago.ac.nz.
Journal of Medical Ethics
|January 9, 2020
Summary
Clinical data ownership is complex. Framing it as private property is insufficient because data is co-constructed. A broader view acknowledges patient interests and re-engages them with research.
Area of Science:
- Bioethics
- Health Policy
- Data Management
Background:
- The concept of 'ownership' is central to debates on clinical data management.
- Current data use raises concerns about citizen disenfranchisement in the data ecosystem.
Purpose of the Study:
- To analyze the concept of 'ownership' in clinical data management.
- To critique the 'private property' model for clinical data.
- To propose a non-property account of data ownership.
Main Methods:
- Conceptual analysis of 'ownership' in relation to clinical data.
- Critique of property-based accounts of data ownership.
- Development of a non-property framework for clinical data interests.
Main Results:
- The language of ownership reflects concerns about data use and disenfranchisement.
- Conceptualizing clinical data as private property is inadequate due to co-construction.
- A non-property account better reflects patient interests in their data.
Conclusions:
- Clinical data ownership requires a nuanced, non-property approach.
- The harm in data management is the disconnection of patients from their data.
- Re-engaging patients with the data research enterprise is a key solution.
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