Personal health technologies such as apps and wearables that generate health and behavior data close to the individual patient are envisioned to enable personalized healthcare - and self-care. And yet, they are consumer devices. Proponents of these devices presuppose that measuring will be helpful, and that data will be meaningful. However, a growing body of research suggests that self-tracking data does not necessarily make sense to users. Drawing together data studies and digital health research, we aim to further research on (...) data ambivalence, a term we use to refer to the ambiguities and uncertainties people experience when interpreting their own data, as well as the critical obligation towards cultivating ethically sound uses and responses to such data in context. We develop the relationship between data, interpretation, and context as a central theoretical and practical problem in the datafication of healthcare. We then show how interpretation and context matter for data ambivalence through an empirical study of heart patients with an implanted advanced pacemaker who were offered a Fitbit wristband for self-tracking as part of a research project. We argue that the hope, anxiety, and doubt connected to the promise and accuracy of data are tempered by the context and purpose of self-tracking, and by individual circumstances. Finally, we link the findings on context-sensitivity in data interpretation to questions about response-ability in cloud-based care infrastructures. We discuss the ethical dilemmas associated with the use of commercial wellness-technologies in healthcare, and with researching such emerging practices. (shrink)

This article is based on a roundtable held at the Association of Internet Researchers annual conference in 2017, in Tartu, Estonia. The roundtable was organized by the Oxford Internet Institute’s Digital Ethics Lab. It was entitled “Artificial Intelligence and the Good Society”. It brought together four scholars—Michael Zimmer, Stine Lomborg, Ben Zevenbergen, and Corinne Cath—to discuss the promises and perils of artificial intelligence, in particular what ethical frameworks are needed to guide AI’s rapid development and increased use in societies. The (...) paper covers three case studies. They give a distinct overview of the ethical issues raised by the use of AI at different levels of analysis: top-down application of AI, bottom-up use of AI, and how academics and governments have reacted to these new challenges. From the case studies, four areas emerged. They represent some of the most topical ethical questions related to AI: its uses, its users, its designers, and the data that fuel it. Each of them provided a specific subset of ethical concerns that need further investigation. In conclusion, three recommendations are formulated for researchers and regulators to ensure the AI has a net-positive impact on society. (shrink)

In its ethics guidelines, the Association of Internet Researchers advocates a bottom-up, case-based approach to research ethics, one that emphasizes that ethical judgement must be based on a sensible examination of the unique object and circumstances of a study, its research questions, the data involved, and the expected analysis and reporting of results, along with the possible ethical dilemmas arising from the case. This article clarifies and illustrates the mind-set and process of such a bottom-up approach to internet research ethics. (...) Two ethics concepts to think with, namely ‘the distance principle’, and the notion of ‘perceived privacy’, are introduced and applied in a concrete empirical internet study, in which web archives based on personal communications on social media formed the main body of data. The empirical case example serves to highlight the unique challenges of internet research ethics, in light of the blurring boundaries between text and person, and between private and public on the internet, with profound implications and challenges for the definition of human subjects, privacy, and so on. (shrink)

The article provides an instructive in-depth analysis of communicative practices in the personal blog. Its aim is to document the discursive dynamics and interactional ethics of blogging, with a specific focus on negotiations of the blogging self in-between public and private. Based on key findings from an empirical case study of personal blogs, the article addresses the negotiation of the blogging self from three interdependent perspectives: the network structures, patterns of interaction, and thematic orientations of the blog. Instead of approaching (...) the online self as the individual blogger’s self-presentation to an often unknown and unfamiliar audience, I analyse and discuss the ‘blogging self’ as a relational and collaborative accomplishment, as something that is constantly subject to negotiation between author and readers, and is framed by the blog as a communicative genre. The theoretical foundation for this relational approach to the self is inspired by the work of sociologist Georg Simmel on how individuals attune to their networks of affiliation in a process of socialisation (Simmel 1955). The article contributes to the discussion of ethical behaviour and privacy protection in social media by highlighting the role of phatic communication in the blog. Specifically, I demonstrate how participants in the blog network negotiate and maintain an ethos of privacy protection in and through practices associated with the phatic. They do this by adhering to a ‘principle of sociability’, allowing them to experience their communication as personal but not private. (shrink)