Guest blog post by Dale Weston from Public Health England
Traditional research in the behavioural sciences has involved the recruitment of members of the public to participate, face to face (or at least via telephone), in experiments, surveys, or interviews which are designed to inform our understanding of a range of individual, social and cognitive phenomena. Specifically, within public health research, the use of quantitative and qualitative research methodologies to inform an understanding of attitudes towards, and perceptions of, various recommended health behaviours, are commonplace.
However, the growth and proliferation of online data and social media has provided a range of opportunities for researchers to both gather data to answer questions of interest. The British Psychological Society (BPS) refers to research using these methods as ‘Internet Mediated Research’, defined as any research that involves using the internet (and related technology, e.g., apps) to collect data from or about human participants. This can involve traditional, active research methodologies (e.g., online surveys/ interviews), or more passive research methods (e.g., analysing discussion fora, collating webpage analytics, or examining search engine data) (BPS, 2017).
The conduct of Internet Mediated Research comprises one element of ongoing research within the MIDAS consortium; particularly related to ongoing work developing a Chatbot (http://www.midasproject.eu/2018/05/25/improving-surveys-with-chatbots/), and work to examine the public acceptability of data sharing (https://youtu.be/tmTzSQK2u7A & http://www.midasproject.eu/2017/08/17/public-acceptability-of-data-linkage-and-sharing/).
Although these new technologies do provide researchers with unprecedented access to a vast population of potential research participants, they also yield specific, in some cases novel, ethical considerations. For example, the use of Internet Mediated Research is likely to lead to ethical issues around:
- the use, control, and storage of large scale datasets,
- timing of consent,
- and specificity regarding any onwards use of data
(Gavin & Rodham, 2017; see also Hunter et al., 2018; Schneble, Elger & Shaw, 2018).
Indeed, as Gavin and Rodham (2017, p. 4) state “traditional ethical concepts of risk, such as physical harm, psychological distress, breach of privacy and anonymity to individuals, [may be] less relevant than concerns about surveillance, individual and group discrimination, and data protection”.
Given these considerations, it’s critically important to ensure that ethical guidelines are up to date and fit for purpose. While guidelines do exist – for example the British Psychological Society (2017) guidelines – Scheble and colleagues (2018) indicate that only a small number of top Universities in the UK, USA and Switzerland have data science guidelines that would enable appropriate ethical evaluations of much Internet Mediated Research; findings that led the authors to recommend that institutions and research associations need to develop appropriate guidance (Scheble et al., 2018). Although the European General Data Protection Regulations (GDPR; European Parliament & Council of the European Union, 2016) is seen as a “step in the right direction” with regards to data privacy and security (Schneble et al., p. 1), there is clearly still work to do.
Whatever the ultimate solution, dialogue is, for now at least, the way forward. Indeed, recent debate in this area has suggested that while these discussions are ongoing, ethical issues relating to research in this space should be considered on a case-by-case basis (Hunter et al., 2018). One such method of facilitating this dialogue the Connected and Open Research Ethics (CORE) initiative, which provides a space for individuals to network, share resources, and discuss ethical issues as they relate to the digital age (Torous & Nebeker, 2017).
Overall, as we move into a modern, digital age of data collection it is important to continue the conversation and debate around what constitutes ethical best practice. Advances in data collection, collation, and synthesis methods will continue unabated and we as researchers need to ensure that we are able to work ethically and appropriately as these developments occur. Work within Work Package 2 of the MIDAS project seeks to help this endeavour through the collation of existing ethics and governance best practice and the development of a model for data governance, consent and privacy. In this way, MIDAS can have an impact on ethics, governance and privacy far beyond the initial outcomes of the project itself!
References
British Psychological Society. (2013). Ethics guidelines for internet-mediated research. Leicester, UK: British Psychological Society.
European Parliament, & Council of the European Union. (2016). Regulation (EU) 2016/679 of the European Parliament and of the council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation). Official Journal of the European Union, L119, p. 1-88.
Gavin, J., & Rodham, K. (2017). Ethical research in the digital age. Psychology Review, p. 2-5.
Hunter, R. F., Gough, A., O’kane, N., McKeown, G., Fitzpatrick, A., Walker, T., … & Kee, F. (2018). Ethical issues in social media research for public health. American journal of public health, 108(3), 343-348.
Schneble, C. O., Elger, B. S., & Shaw, D. (2018). The Cambridge Analytica affair and Internet‐mediated research. EMBO reports, 19(8), e46579.
Torous, J, & Nebeker, C. (2017). Navigating ethics in the digital age: introducing connected and open research ethics (CORE), a tool for researchers and institutional review boards. Journal of Medical Internet Research, 19(2):e38. doi: 10.2196/jmir.6793