Ownership of individual-level health data, data sharing, and data governance

Journal article

An important implication of the increasing availability and use of technologies to support care for people with diabetes is that huge quantities of data are now being generated about them on a routine basis. This has led to calls for people with diabetes to have greater access to and control over how ‘their’ health data are used. In this article, we analyse some of the legal challenges arising in this context. Focusing on the United Kingdom and European Union, we point to the lack of a clear legal framework to balance the different interests in the context of diabetes data, noting that calls for ‘data ownership’, while understandable, do not fit easily within existing legal frameworks and would not offer the kind of protections that some within the diabetes community are advocating for. We offer suggestions for supporting such calls. We first note the existing, but perhaps under-utilised, legal mechanisms available to people with diabetes over their data, such as data subject rights under the General Data Protection Regulation. Then, drawing inspiration from existing and emergent frameworks, we argue that the interests of people with diabetes could be bolstered by something like the Diabetes Data Rights Charter currently being co-developed by researchers and members of the diabetes community

Authors: Piasecki, J; Cheah, PY

• Publication status: Published
• Peer review status: Peer reviewed
• Publisher: BioMed Central
• Journal: BMC Medical Ethics
• Volume: 23
• Issue: 1
• Pages: 104-104
• Article number: 104
• Publication date: 2022-10-29
• DOI: 10.1186/s12910-022-00848-y
• EISSN: 1472-6939
• ISSN: 1472-6939
• Language: English
• Keywords: Business; Marketing; Public relations; Finance; Economic Justice; Corporate governance; Data governance; Data sharing; Philosophy of medicine; Microeconomics; Economics; Data quality; Public economics; Political science; Medicine; Public health; Autonomy