As the recently appointed Chair of the University’s Ethics Committee, I have been reflecting on what we expect of the researchers who submit their protocols for ethical review and why we insist on review. As I see it, the review process is intended to help researchers to protect the human participants in their research from any potential for harm or distress, to ensure that the burden we place upon participants is not too high and is justified by the gains in knowledge that the research provides, and to check that participants will be able to understand properly what is asked of them and to know that they have the freedom not to take part. Where a project is deemed higher risk, maybe because participants could possibly incur some kind of harm or distress, or are in a vulnerable position, the reviewers of an ethics committee can play a very important role in helping researchers to spot ethical weak spots in their plans and find ways better to protect participants. We all have confidence in our own judgment as researchers but new pairs of eyes, particularly ones practiced at spotting and solving ethical challenges, can be a great boon in making a project better for all concerned.
I do see ethical review as a positive process, then, although I know that its bureaucratic aspects are not always welcomed with joy by those who need to submit their protocols for review. Putting in for ethical review should be an occasion for making sure all aspects of a protocol are completely clear and well-justified, and for doing some very useful imaginative work: how might this work in practice, and what could go wrong? A risk assessment usually forms part of the submission, and to be useful a risk assessment needs to be bold and imaginative, and consciously to shift in register from “it’ll be fine” to “what conceivably could go wrong”. An ethics committee will want to see that potential pitfalls have been anticipated and that appropriate steps have been put in place to deal with any contingencies. Researchers have to be imaginative to put themselves in the shoes of research participants, and to consider how they might feel and react. It’s never good to be in the position of trying to repair a broken relationship with participants or correct misunderstandings after the event, and those extra pairs of eyes in the review process can be very useful in helping to make sure that doesn’t happen.
Imaginative work, and in particular imagining the world of research participants is an important part of my personal research ethics. I conduct online social research, and in this field it has become increasingly challenging to work out just what our responsibilities as researchers might be. As an online researcher I strive to sustain an appropriate stance on informed consent, aiming to respect people’s expectations of privacy and their right to be left alone if they so wish. The Internet offers abundant data on the minutiae of everyday life, free-for-the taking: but mere availability surely does not mean that this data should automatically be fair game for social research. However, in the online world outside academic research studies privacy and control over our own data seem more and more things of the past, as mass surveillance, commercial data mining, and the data suffused territory of the Internet of Things become part of a complex set of data flows that are difficult for any of us to opt out of in any meaningful fashion. The terms and conditions we accept when we sign up to online services often provide a poor proxy for informed consent, as commercially owned platforms become near-monopolies among our social networks and refusing to click and accept carries a palpable social cost. Data that seem to be deleted from one context pop up in another, and search engines have long memories. Informed consent, for much of the Internet, is pretty broken, in practice if not in theory.
In this volatile and privacy-compromised environment a social researcher taking a stand for full informed consent can feel rather out of step, fighting a rearguard action for an outdated paradigm. Sometimes, indeed, we might decide that the lack of sensitivity of the data and the public nature of an Internet forum justify a waiver of directly negotiated informed consent, but that is not a foregone conclusion in many online settings. It is still important, in every case, to do that imaginative work of reflecting on how it might feel to someone we come across in an online space to have their words appropriated for a research project. A lot of imagination, bolstered by as much background information as we can muster on what these particular words might mean in the lives of these people, is needed to arrive at a decision on whether a particular set of data gathered from an online setting might be considered suitable for use in a specific set of analytic techniques, and what form of consent or waiver might be appropriate. At that point, ethical review is often a very positive contribution, helping us to work out how to keep our research practice in step with the complexities of consent in a chaotic digital world and at the same time in line with deeply cherished notions of research ethics.
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