Examining the power of the social imaginary through competing narratives of data ownership in health research

Abstract

This article explores the social imaginary in the context of data ownership and the (non-)delivery of the data sharing revolution in biomedicine. We contribute to this Special Issue’s broad definition of an imaginary—as the shared (or, here, divergent) stakeholder views on the hopes, promises and expectations to be engendered through technoscientific development—by developing a method and paradigm of ‘competing narratives’. Despite multiple initiatives to encourage health data sharing, and a strong ‘open access’ agenda, the data sharing revolution is not yet delivered. Ownership is persistently (though inconsistently) presented as a barrier to data sharing. However, existing literature does not reveal how far appeals to ownership are part of the problem. This paper reports original, interdisciplinary research asking: in health research, in what ways, if at all, do notions of ownership (broadly conceived) of health-related data impact on sharing practices? Doctrinal and empirical research methods are used to expose evidence of drivers behind appeals to ownership in health data sharing. The findings speak to how funders and data custodians can better tailor existing and potential data sharing initiatives to perspectives and behaviors. The concept of ‘my data’ is important: notions of reward, opportunity, control, and safeguarding establish legitimate, potentially competing ‘ownership’ interests in data. In particular, this research raises questions about the long-term effectiveness of an open access ideology that ignores these subtleties. In conclusion we find power in the social imaginary of ownership with respect to biomedical data; however, that power emerges and is enacted in unexpected ways by multiple actors within the ecosystem, often driven by competing narratives about what is at stake. Importantly, formal legal property-type appeals to ownership appear to have far less power in the narratives about data than the ethical and social concerns that underpin responsible biomedical research.

Record linkage of population-based cohort data from minors with national register data: a scoping review and comparative legal analysis of four European countries

“…We argue in line with Sorbie et al (2021) that even though data ownership and the idea of 'my data' is central for notions of reward, opportunity and control-as executed in Portugal -, ethical and social concerns of data that reinforce biomedical research are of greater importance 86 . Thus, based on the Finnish example, a centralized management of national data may be beneficial for research outputs serving as a powerful basis of data at national level and will further facilitate cross-national record linkage of data.…”

“…Researcher must comply with both the main rules of the GDPR and the special rules of the Personal Data Act when processing personal data. Other regulations for research using medical data are the Act on Medical and Health Research (Health Research Act) of June 200886 (altered by the Act on Amendment in Personal Health Data Filing System Act of January 1, 2021)…”

Untitled

“…38 Notwithstanding the problems 34 Regulation 2020/2092 of the European Parliament and of the Council of 16 December 2020 on a general regime of conditionality for the protection of the Union budget. 35 See for example the guidelines set by the European Council in the context of dealing with financial repercussions of the Covid 19 pandemic, European Council Conclusions, 17-21 July 2020, 15 f. 36 See the contrasting views in Editorial Comments, 'Compromising (on) the General Conditionality Mechanism and the Rule of Law' (2021) 58 Common Market Law Review 267-284 (infringement) DOI: https://doi. org/10.54648/COLA2021020; Bruno de Witte, 'The European Union's COVID-19 Recovery Plan: The Legal Engineering of an Economic Policy Shift' (2021) 58 (3) Common Market Law Review 635-682, 667 ff., 681 (no infringement) DOI: https://doi.org/10.54648/COLA2021046.…”

“…The declining importance of the German mediation committee is a sign of its increasingly fragmented party-political landscape. 58 Today many politically decisive mediations take place directly between the parties. 59 With 190 parties in the European Parliament and no European parties to guide the process of political positioning across institutions, the European democracy of negotiation cannot pursue such a path.…”

Three decades of genetic privacy: a metaphoric journey

“…Despite our own practical and legal objections to the notion of genetic property, the language and narrative of ownership in genetic and health data resonates with many. What ‘ownership’ connotes shifts in response to context and speaker, and attention is warranted ( 59 ). Even the generally exclusionary nature of ownership can be understood in terms that emphasizes the qualities of relationships we want to promote ( 60 ).…”