BackgroundIncreasingly, hospitals and research institutes are developing technical solutions for sharing patient data in a privacy preserving manner. Two of these technical solutions are homomorphic encryption and distributed ledger technology. Homomorphic encryption allows computations to be performed on data without this data ever being decrypted. Therefore, homomorphic encryption represents a potential solution for conducting feasibility studies on cohorts of sensitive patient data stored in distributed locations. Distributed ledger technology provides a permanent record on all transfers and processing of patient data, (...) allowing data custodians to audit access. A significant portion of the current literature has examined how these technologies might comply with data protection and research ethics frameworks. In the Swiss context, these instruments include the Federal Act on Data Protection and the Human Research Act. There are also institutional frameworks that govern the processing of health related and genetic data at different universities and hospitals. Given Switzerland’s geographical proximity to European Union (EU) member states, the General Data Protection Regulation (GDPR) may impose additional obligations.MethodsTo conduct this assessment, we carried out a series of qualitative interviews with key stakeholders at Swiss hospitals and research institutions. These included legal and clinical data management staff, as well as clinical and research ethics experts. These interviews were carried out with two series of vignettes that focused on data discovery using homomorphic encryption and data erasure from a distributed ledger platform.ResultsFor our first set of vignettes, interviewees were prepared to allow data discovery requests if patients had provided general consent or ethics committee approval, depending on the types of data made available. Our interviewees highlighted the importance of protecting against the risk of reidentification given different types of data. For our second set, there was disagreement amongst interviewees on whether they would delete patient data locally, or delete data linked to a ledger with cryptographic hashes. Our interviewees were also willing to delete data locally or on the ledger, subject to local legislation.ConclusionOur findings can help guide the deployment of these technologies, as well as determine ethics and legal requirements for such technologies. (shrink)

Smartphones are increasingly entangled with the most intimate areas of everyday life, providing possibilities for the continued expansion of digital self-tracking technologies. Within this context, the development of smartphone applications targeted at female reproductive health are offering novel forms and practices of knowledge production about reproductive bodies and processes. This article presents empirical research from the United Kingdom on women’s use of fertility tracking applications, known more generally as fertility apps, while trying to conceive. Drawing on material from interviews with (...) women who had experience of using fertility apps, I demonstrate the significance of this particular form of fertility tracking for the embodied shift from pregnancy prevention to actively facilitating pregnancy, participants’ sense of self and identity and how they perceived the reproductive potentiality of their bodies. I argue that fertility apps are significantly involved in making fertility cycles known and thus configuring the pre-pregnant reproductive body. (shrink)

How should we understand the surveillance state post Snowden? This paper is concerned with the relationship between increased surveillance capacity and state power. The paper begins by analysing two metaphors used in public post Snowden discourse to describe state surveillance practices: the haystack and the panopticon. It argues that these metaphors share a flawed common entailment regarding surveillance, knowledge and power which cannot accurately capture important aspects of state anxiety generated by mass surveillance in an age of big data. The (...) paper shows that the nature of big data itself complicates the power attributed to mass surveillance states by these metaphors and those who use them. Relying heavily on Ezrahi’s distinction between information and knowledge, the paper situates this argument concerning the state and anxiety borne of information overload in the context of literature that concerns the state and information management. Drawing primarily on James Scott’s work on legibility, it argues that the big data born of mass surveillance problematises the concept of information as empowering the state. Instead, understanding mass surveillance in an age of big data requires understanding the relationship between the surveillance state and information in terms of anxiety as well as power. (shrink)

The article explores the historicity of political subjecthood, making the case that through a process of subjectification “subjects of the king” gradually became the political subjects of the state. This in turn contributed to reconstitute the state as an abstract notion that nevertheless was real through the allegiance owed to it by its subjects. Addressing the making of subjecthood in relation to state formation helps fill an important lacuna in the literature on state formation, namely the double oversight of subjecthood. (...) Either studies of state formation have taken both territory and subjecthood—the two objects of state power—for granted, or, more recently, they have assumed that changes in subjecthood were a function of changes in territoriality. I propose to address this by inquiring into early modern subjecthood in its own right, through a historical exploration of the emergence of political subjecthood in English statutes during the Tudor period. Through gradual yet incremental changes in the relation between subject/king and subject/state, the political subject’s allegiance to the state changed and acquired a “taken-for-grantedness”—maintained and reinforced through constant legal reiteration. (shrink)