Self-reported data are regarded by medical researchers as invalid and less reliable than data produced by experts in clinical settings, yet individuals can increasingly contribute personal information to medical research through a variety of online platforms. In this article we examine this ‘participatory turn’ in healthcare research, which claims to challenge conventional delineations of what is valid and reliable for medical practice, by using aggregated self-reported experiences from patients and ‘pre-patients’ via the internet. We focus on 23andMe, a genetic testing (...) company that collects genetic material and self-reported information about disease from its customers. Integral to this research method are relations of trust embedded in the information exchange: trust in customers’ data; trust between researchers/company and research subjects; trust in genetics; trust in the machine. We examine the performative dimension of these trust relations, drawing on Shapin and Schaffer’s discussion of how material, literary and social technologies are used in research in order to establish trust. Our scepticism of the company’s motives for building trust with the self-reporting consumer forces us to consider our own motives. How does the use of customer data for research purposes by 23andMe differ from the research practices of social scientists, especially those who also study digital traces? By interrogating the use of self-reported data in the genetic testing context, we examine our ethical responsibilities in studying the digital selves of others using internet methods. How researchers trust data, how participants trust researchers, and how technologies are trusted are all important considerations in studying the social life of digital data. (shrink)

The essays in this book clarify the technical, legal, ethical, and social aspects of the interaction between eHealth technologies and surveillance practices. The book starts out by presenting a theoretical framework on eHealth and surveillance, followed by an introduction to the various ideas on eHealth and surveillance explored in the subsequent chapters. Issues addressed in the chapters include privacy and data protection, social acceptance of eHealth, cost-effective and innovative healthcare, as well as the privacy aspects of employee wellness programs using (...) eHealth, the use of mobile health app data by insurance companies, advertising industry and law enforcement, and the ethics of Big Data use in healthcare. A closing chapter draws on the previous content to explore the notion that people are 'under observation', bringing together two hitherto unrelated streams of scholarship interested in observation: eHealth and surveillance studies. In short, the book represents a first essential step towards cross-fertilization and offers new insights into the legal, ethical and social significance of being 'under observation'. (shrink)

The availability of medical and health information on the world wide web has led to a long discussion about the reliability of that information. Various medical, political, and independent organizations have created user-friendly tools for finding reliable medical/health information on the web and have been faced with the challenge of defining what it means for information to be reliable. Little attention has been given to the work of reviewing web-based information and applying selection criteria to individual sites. In this article, (...) the authors examine how guidelines are applied in practice and discuss how the selection criteria and the practices of applying them reinforce distinctions that current medical sociology and informatics literature suggests have been broken down by internet technologies and the availability of web-based medical information. (shrink)

Recent medical informatics and sociological literature has painted the image of a new type of patient—one that is reflexive and informed, with highly specified information needs and perceptions, as well as highly developed skills and tactics for acquiring information. Patients have been re-named “reflexive consumers.” At the same time, literature about the questionable reliability of web-based information has suggested the need to create both user tools that have pre-selected information and special guidelines for individuals to use to check the individual (...) characteristics of the information they encounter. In this article, we examine suggestions that individuals must be assisted in developing skills for “reflexive consumerism” and what these particular skills should be. Using two types of data (discursive data from websites and promotional items, and supplementary data from interviews and ethnographic observations carried out with those working to sustain these initiatives), we examine how users are directly addressed and discussed. We argue that these initiatives prescribe skills and practices that extend beyond finding and assessing information on the internet and demonstrate that they include ideals of consumerism and citizenship. (shrink)