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 [1].Early concerns in computing circled around the problem of customer data in commercial systems [2]. 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 [3], 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 [4]. 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. [5]) 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 [1].

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 [7]). 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 [10]. 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 [11].

In another case, researching how those living with HIV collate data about their day-to-day health [12], 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 [13]. 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 [14]. 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 [15]. 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’ [9] (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 [16]. 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.


  1. Borthick, A. F. and Patterson, V. K. 1978. Promoting ethicality in computing. In Proceedings of the 6th annual ACM SIGUCCS conference on User services (Boston, Massachusetts, USA, 1978). ACM, 69. DOI:
  2. Smith, J. W. 1997. The practical management of information ethics problems: test your appropriate use policy. SIGUCCS Newsl., 27, 1-2 (1997), 16-17.
  3. Takkar, U. 1990. Ethics in the design of human computer interfaces for the disabled. SIGCAPH Comput. Phys. Handicap., 42 (1990), 1-7.
  4. Mackay, W. E. 1991. Ethical issues in the use of video: is it time to establish guidelines? In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (New Orleans, Louisiana, USA, 1991). ACM, 403-405. DOI:
  5. Bruckman, A. Research Ethics and HCI. Springer New York, City, 2014.
  6. Stahl, B. C., Timmermans, J. and Mittelstadt, B. D. 2016. The Ethics of Computing: A Survey of the Computing-Oriented Literature. ACM Comput. Surv., 48, 4 (2016), 1-38.
  7. Waycott, J., Munteanu, C., Davis, H., Thieme, A., Branham, S., Moncur, W., McNaney, R. and Vines, J. 2017. Ethical Encounters in HCI: Implications for Research in Sensitive Settings. In Proceedings of the 2017 CHI Conference Extended Abstracts on Human Factors in Computing Systems (Denver, Colorado, USA, 2017). ACM, 518-525. DOI:
  8. Talhouk, R., Mesmar, S., Thieme, A., Balaam, M., Olivier, P., Akik, C. and Ghattas, H. 2016. Syrian Refugees and Digital Health in Lebanon: Opportunities for Improving Antenatal Health. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (San Jose, California, USA, 2016). ACM, 331-342. DOI:
  9. Vines, J., McNaney, R., Holden, A., Poliakov, I., Wright, P. and Olivier, P. 2017. Our Year With the Glass: Expectations, Letdowns and Ethical Dilemmas of Technology Trials With Vulnerable People. Interacting with Computers, 29, 1 (2017), 27-44.
  10. Owen, T., Pearson, J., Thimbleby, H. and Buchanan, G. 2015. ConCap: Designing to Empower Individual Reflection on Chronic Conditions using Mobile Apps. In Proceedings of the 17th International Conference on Human-Computer Interaction with Mobile Devices and Services (Copenhagen, Denmark, 2015). ACM, 105-114. DOI:
  11. Waycott, J., Vetere, F., Pedell, S., Morgans, A., Ozanne, E. and Kulik, L. 2016. Not For Me: Older Adults Choosing Not to Participate in a Social Isolation Intervention. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (San Jose, California, USA, 2016). ACM, 745-757. DOI:
  12. Bussone, A., Stumpf, S. and Buchanan, G. 2016. It Feels Like I'm Managing Myself: HIV+ People Tracking Their Personal Health Information. In Proceedings of the 9th Nordic Conference on Human-Computer Interaction (Gothenburg, Sweden, 2016). ACM, 1-10. DOI:
  13. McKay, D., Sanchez, S. and Parker, R. 2010. What's my name again?: sociotechnical considerations for author name management in research databases. In Proceedings of the 22nd Conference of the Computer-Human Interaction Special Interest Group of Australia on Computer-Human Interaction (Brisbane, Australia, 2010). ACM, 240-247. DOI:
  14. Riederer, C., Kim, Y., Chaintreau, A., Korula, N. and Lattanzi, S. 2016. Linking Users Across Domains with Location Data: Theory and Validation. In Proceedings of the 25th International Conference on World Wide Web (Montréal, Québec, Canada, 2016). International World Wide Web Conferences Steering Committee, 707-719. DOI:
  15. Gouvea, R., Linton, J. D., Montoya, M. and Walsh, S. T. 2012. Emerging Technologies and Ethics: A Race-to-the-Bottom or the Top? Journal of Business Ethics, 109, 4 (September 01 2012), 553-567.
  16. Guillemin, M. and Gillam, L. 2004. Ethics, Reflexivity, and “Ethically Important Moments” in Research. Qualitative Inquiry, 10, 2 (2004), 261-280.