CHI Workshop on Ethical Issues with Research Data
The formal human ethics procedures that govern HCI research within many institutions cover how data might be sourced and gathered, but give little, if any guidance as to how data might be used once it has been gathered. Similarly these processes do not cover or indeed deliberately and consciously exclude work using publically available data, large data sets gathered by others, and data gathered by commercial organisations. Similarly, these processes do not cover all research activity; commercial or industrial research occurs outside the institutional structures that ethics procedures adhere to. Even where not covered by formal ethics procedures, we have a responsibility as HCI researchers to act ethically. How to extend our ethical behaviours, beliefs, and processes to data access and use is an open and challenging research question, and the subject of this workshop.
The subject of computer ethics is a long-established research field .Early concerns in computing circled around the problem of customer data in commercial systems . It was well understood that this sort of data was sensitive both to the company holding the data, and the customer who the data was about. The consideration of maintaining the security and privacy of this data followed as fundamental concerns of practice in HCI.
As HCI grew as a research discipline, the question of research ethics rapidly emerged. One early specific concern was appropriate conduct when working with users with a disability , and this marked the beginning of a particular awareness of conduct when working with potentially vulnerable groups. The particularities of specific types of information also emerged as an issue, e.g. when Wendy MacKay provoked a discussion over the capture of video data in research . MacKay noted the multiple challenges of live-recorded video, with its opportunity to reveal more than was either needed or desirable for the research at hand.
Contemporary reviews of the ethical literature [5, 6] underline and reaffirm the importance of long-standing concerns of HCI ethics, such as unintended exposure of user data, and sensitivity when working with vulnerable groups. However, the emphasis of many works (e.g. ) on complying with institutional review boards or other ethical review processes reflects a pragmatic, sometimes a mandated, engagement with formal research process in an academic context. However, this is somewhat different to early concerns with the operational focus of the early work .
The codes-of-conduct of leading professional organisations demand more than mere compliance with formal processes, however. They typically expect active concern with the impact of professional work, industrial or research , . Such active engagement by interaction designers is evidenced by recent activities on the theme of ethics in HCI research (e.g ). Information plays a critical role in HCI research, whether for design or theoretical work. The implications of system use are also often found within the brief of the user-experience professional. From the experiences of the organisers, there is a particular onus on HCI researchers to identify, engage with, and resolve, the intentional and unintentional consequences of information use.
HCI now engages with many vulnerable and potentially vulnerable groups (e.g. [8, 9]). In the course of such engagements, it is often noted that additional data emerges that is not a central to the research purpose. In our own experience the same issues arose in dealing with those living with diabetes, a complex but often invisible condition . As a result, ethical issues can emerge in the middle of a research programme. One example case is seen in elderly users who withdrew from a study, raising the issue of the validity of either using or removing their incomplete data .
In another case, researching how those living with HIV collate data about their day-to-day health , there was the risks such as: the data revealing unsafe practices, the identity of the user, or the status of others. Care had to be taken at each point, but it was appreciated in advance that not all potential complications could be anticipated, and pro-active steps needed to be taken. Furthermore, apps are in use that collate the data, and thus carry the same risks, but may not have consciously considered the data risks to the user as part of their design process.
In other contexts, public data about people can be used for all sorts of benign reasons, such as collating the papers that they have published . However, the same data, particularly if combined with other data sources, could be used to automatically assign other personal characteristics. If that data was wrongly assigned, were associated with contended subjects or identities, etc., risks to the person could emerge that were unintended. In the presence of initiatives such as Wales’ BioBank that aims to get 250,000 people to donate their health records as public documents, such risks are non-trivial . The typical member of the public may not discern the potential risks of participating in such an initiative, or even that carried with apparently trivial online content.
The vulnerabilities when data is made public can be acute – e.g. recent research has demonstrated that even two points of geo-location data can uniquely identify individuals . In this context, understanding how to explain risks to users, to obtain meaningful, informed consent can be problematic, but a cautious approach would lead to major implications for interaction design.
The commercialization and invention of new emerging technologies, such as mobile devices, intelligent personal assistants, or interactive assistive applications are only expected to increase and diversify the ethical problems faced by interaction researchers and designers . Not only do new technologies evolve rapidly, but their contexts of use repeatedly adjust with use, and their target range of users (especially marginalized populations) are frequently and regularly redefined. Therefore, researchers ‘should be prepared for situational ethical dilemmas and be supported in developing a range of tactics and sensitivities to respond to them in the field’  (p.2).
What we have given here are just a few examples of the many contexts in which HCI researchers may encounter unexpected ethical dilemmas in the use of data that were never anticipated during research planning. The proliferation of novel technologies, usage logging, publically accessible data on social networks, medical and personal health tracking and big data will only serve to increase the likelihood that HCI researchers will encounter such challenges . This workshop aims to bring together HCI researchers from both academic and industrial backgrounds who have encountered such ethical challenges with a view to discussing and categorising them. The long term goals of this workshop are the development of ethical principles to manage such challenging situations, and the publication of an edited book addressing the challenges and outlining these new principles.
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