This article addresses the general ethical issues of accessing online personal data for research purposes. The authors discuss the practical aspects of online research with a specific case study that illustrates the ethical challenges encountered when accessing data from Kooth, an online youth web-counselling service. This paper firstly highlights the relevance of a process-based approach to ethics when accessing highly sensitive data and then discusses the ethical considerations and potential challenges regarding the accessing of public data from Digital Mental Health (...) services. It presents solutions that aim to protect young DMH service users as well as the DMH providers and researchers mining such data. Special consideration is given to service users’ expectations of what their data might be used for, as well as their perceptions of whether the data they post is public, private or open. We provide recommendations for planning and designing online research that includes vulnerable young people as research participants in an ethical manner. We emphasise the distinction between public, private and open data, which is crucial to comprehend the ethical challenges in accessing DMH data. Among our key recommendations, we foreground the need to consider a collaborative approach with the DMH providers while respecting service users’ control over personal data, and we propose the implementation of digital solutions embedded within the platform for explicit opt-out/opt-in recruitment strategies and ‘read more’ options. (shrink)

This article addresses the general ethical issues of accessing online personal data for research purposes. The authors discuss the practical aspects of online research with a specific case study that illustrates the ethical challenges encountered when accessing data from Kooth, an online youth web-counselling service. This paper firstly highlights the relevance of a process-based approach to ethics when accessing highly sensitive data and then discusses the ethical considerations and potential challenges regarding the accessing of public data from Digital Mental Health (...) services. It presents solutions that aim to protect young DMH service users as well as the DMH providers and researchers mining such data. Special consideration is given to service users’ expectations of what their data might be used for, as well as their perceptions of whether the data they post is public, private or open. We provide recommendations for planning and designing online research in an ethical manner that includes vulnerable young people as research participants. We emphasise the distinction between public, private and open data, which is crucial to comprehend the ethical challenges in accessing DMH data. Among our key recommendations, we foreground the need to consider a collaborative approach with the DMH providers while respecting service users’ control over personal data, and we propose the implementation of digital solutions embedded within the platform for explicit opt-out/opt-in recruitment strategies and ‘read more’ options. (shrink)

ABSTRACT The technological revolution has created enormous opportunities for the provision of affordable, accessible, and flexible mental healthcare. Yet it also creates complexities and ethical challenges. While some of these challenges may be similar to face-to-face care, their nuance in the online milieu is different, as relationships, identities and boundaries in this setting are fluid, and there is an absence of physical presence. In this paper we consider the specific ethical complexities involved in the provision of a social networking intervention (...) for depression and problematic alcohol use involving providers and peers. We present a case in which clinicians encountered a participant who repeatedly expressed suicidal thoughts in this online forum, and reflect on how this situation was managed. In analyzing this case, we use relational ethics—which proposes that interpersonal relationships are the fulcrum for ethical decision-making and action—together with actor-network theory—which highlights the power of technology to transform and mediate social and ethical relationships. Our analysis demonstrates the need to move beyond human-centric approaches, to recognize the role of both human and non-human actors in shaping moral decisions and behavior in the provision of e-mental healthcare. (shrink)

In this article I reflect on my experiences of using Facebook as a recruitment tool. Although there were many benefits associated with using this method of recruitment, there were also several unanticipated ethical dilemmas that arose. This article reflects on these dilemmas, locating them within some broader concerns around online research and privacy, and considers some potential avenues for avoiding similar issues in future research. It became apparent that these ethical issues were heightened for me as a doctoral researcher in (...) a process of identity transition. I consider how this state of ‘shifting’ identity heightened my experience of these ethical tensions, and brought to the fore questions around online identity management and ways of ‘doing’ identity online. (shrink)

Some public health behavioral intervention research studies involve deception. A methodological imperative to minimize bias can be in conflict with the ethical principle of informed consent. As a case study, we examine the specific forms of deception used in three online randomized controlled trials evaluating brief alcohol interventions. We elaborate our own decision making about the use of deception in these trials, and present our ongoing findings and uncertainties. We discuss the value of the approach of pragmatism for examining these (...) kinds of ethical issues that can arise in research on public health interventions. (shrink)

In this article we investigate the nature of problem presentation and responses on an online forum for young people who self-harm. Previous studies have raised concerns about the peer encouragement of self-harming behaviours in online forums, and this analysis considers the nature of peer interaction on a specific forum, ‘ SharpTalk’. This was a research forum which explored the potential of online communities to foster engagement and shared learning between NHS professionals and young people who self-harm. This analysis draws on (...) conversation analysis methods to study problem presentation and responses, and nature of advice given. Analysis highlighted both the tendency to offer advice where it was not asked for, and the mundane ‘safe’ nature of advice. This awareness of how young people interact and provide support online is important for those setting up online interventions to support young people who self-harm. (shrink)