Ansgar Koene

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.

Purpose The purpose of this paper is to report on empirical work conducted to open up algorithmic interpretability and transparency. In recent years, significant concerns have arisen regarding the increasing pervasiveness of algorithms and the impact of automated decision-making in our lives. Particularly problematic is the lack of transparency surrounding the development of these algorithmic systems and their use. It is often suggested that to make algorithms more fair, they should be made more transparent, but exactly how this can be achieved remains unclear. Design/methodology/approach An empirical study was conducted to begin unpacking issues around algorithmic interpretability and transparency. The study involved discussion-based experiments centred around a limited resource allocation scenario which required participants to select their most and least preferred algorithms in a particular context. In addition to collecting quantitative data about preferences, qualitative data captured participants’ expressed reasoning behind their selections. Findings Even when provided with the same information about the scenario, participants made different algorithm preference selections and rationalised their selections differently. The study results revealed diversity in participant responses but consistency in the emphasis they placed on normative concerns and the importance of context when accounting for their selections. The issues raised by participants as important to their selections resonate closely with values that have come to the fore in current debates over algorithm prevalence. Originality/value This work developed a novel empirical approach that demonstrates the value in pursuing algorithmic interpretability and transparency while also highlighting the complexities surrounding their accomplishment.

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.