This paper supports the personal data platform cooperative as a means of bringing about John Rawls’s favoured institutional realisation of a just society, the property-owning democracy. It describes personal data platform cooperatives and applies Rawls’s political philosophy to analyse the institutional forms of a just society in relation to the economic power deriving from aggregating personal data. It argues that a society involving a significant number of personal data platform cooperatives will be more suitable to realising Rawls’s principle of fair (...) equality of opportunity. (shrink)

Background The ownership status of individual-level health data affects the manner in which it is used. In this paper we analyze two competing models of the ownership status of the data discussed in the literature recently: private ownership and public ownership. Main body In this paper we describe the limitations of these two models of data ownership with respect to individual-level health data, in particular in terms of ethical principles of justice and autonomy, risk mitigation, as well as technological, economic, (...) and conceptual issues. We argue that undifferentiated application of neither private ownership nor public ownership will allow us to resolve all the problems associated with effective, equitable, and ethical use of data. We suggest that, instead of focusing on data ownership, we should focus on the institutional and procedural aspects of data governance, such as using Data Access Committees (DACs) or equivalent managed access processes, which can balance the elements of these two ownership frameworks. Conclusion Undifferentiated application of the ownership concept (private or public) is not helpful in resolving problems associated with sharing individual-level health data. DACs or equivalent managed access processes should be an integral part of data governance. They can approve or disapprove data access requests after considering the potential benefits and harms to data subjects, their communities, primary researchers, and the wider society. (shrink)

The article introduces the concept of "surveillance-capitalist biopolitics" to problematize the recent expansion of "data extractivism" in health care and health research. As we show, this trend has accelerated during the ongoing Covid pandemic and points to a normalization and institutionalization of self-tracking practices, which, drawing on the "quantified self", points to the emergence of a "quantified collective". Referring to Foucault and Zuboff, and by analyzing key examples of the leading "Big Tech" companies (e.g., Alphabet and Apple), we argue that (...) contemporary forms of digital biopolitics are privatized, opaque, flexible, and not limited to the state. Instead, especially through the integration of wearable technologies, the biopolitical regulation of bodies is increasingly mediated by private tech companies. These companies rely on a questionable narrative of participation, responsibility, and care despite owning, and ultimately controlling, access to intimate health data and the proprietary algorithms mediating this data. The article shows that the proliferation of "surveillance-capitalist biopolitics" ultimately strengthens not only market power but also the epistemic and infrastructural power of the dataowning and gadget-producing firms. Finally, against an exclusively repressive and negative reading of biopolitics, and to effectively counter the forms of power emerging from surveillance-capitalist biopolitics, we propose four dimensions that are central to its democratizationnamely privacy/individual sovereignty, democratic deliberation, pluralism, and epistemic equality. -/- DOI: 10.1007/s41358-021-00309-9. (shrink)

Mobile health (mHealth) technologies for self-monitoring health-relevant parameters such as heart frequency, sleeping patterns or exercise regimes aim at fostering healthy behavior change and increasing the individual users to promote and maintain their health. We argue that this aspect of mHealth supports healthism, the increasing shift from institutional responsibility for public health toward individual engagement in maintaining health as well as mitigating health risks. Moreover, this healthist paradigm leads to a shift from understanding health as the absence of illness to (...) regarding health as the performance of certain rituals in order to project healthiness. By drawing from the analogy between healthiness and traditional virtues, we evaluate the promises made by proponents of mHealth technologies for self-monitoring. We argue that the implementation and use of mHealth risk entrenching existing inequalities and, more particularly, tend to exclude populations situated at the losing end of those inequalities from participating in the quasi-virtue of healthiness. Consequently, the implementation and use of mHealth technologies not only present challenges for social justice but also undermine their primary societal goal—to promote public health. Finally, we offer several suggestions on how to realize the potential benefit of mHealth. (shrink)

New models of data governance for health data are a focus of growing interest in an era of challenge to the social licence. In this article, we reflect on what the data trust model, which is founded on principles of participatory governance, can learn from experiences of involving and engagement of members of the public and participants in the governance of large-scale biobanks. We distinguish between upstream and ongoing governance models, showing how they require careful design and operation if they (...) are to deliver on aspirations for deliberation and participation. Drawing on this learning, we identify a set of considerations important to future design for data trusts as they seek to ensure just, proportionate and fair governance. These considerations relate to the timing of involvement of participants, patterns of inclusion and exclusion, and responsiveness to stakeholder involvement and engagement. We emphasise that the evolution of governance models for data should be matched by a commitment to evaluation. (shrink)

Public trust is paramount for the well functioning of data driven healthcare activities such as digital health interventions, contact tracing or the build-up of electronic health records. As the use of personal data is the common denominator for these healthcare activities, healthcare actors have an interest to ensure privacy and anonymity of the personal data they depend on. Maintaining privacy and anonymity of personal data contribute to the trustworthiness of these healthcare activities and are associated with the public willingness to (...) trust these activities with their personal data. An analysis of online news readership comments about the failed care.data programme in England revealed that parts of the public have a false understanding of anonymity in the context of privacy protection of personal data as used for healthcare management and medical research. Some of those commenting demanded complete anonymity of their data to be willing to trust the process of data collection and analysis. As this demand is impossible to fulfil and trust is built on a false understanding of anonymity, the inability to meet this demand risks undermining public trust. Since public concerns about anonymity and privacy of personal data appear to be increasing, a large-scale information campaign about the limits and possibilities of anonymity with respect to the various uses of personal health data is urgently needed to help the public to make better informed choices about providing personal data. (shrink)