Participatory Research and the Ethics of Anonymisation

Abstract

Research in the UK is increasingly regulated by ethics review committees (RECs) which require researchers to seek ethics approval before commencing research. These RECs routinely expect researchers to anonymise data as part of standard ethical research practice. However, the anonymisation of data may sit in tension with participatory approaches to research which prioritise shared ownership of the research. In particular, the need to make decisions relating to ethics prior to the start of research makes it difficult for researchers to meaningfully share decision-making power with their participants—a fundamental principle of participatory approaches. This paper uses a participatory research study as a case study to explore this tension. In the study, the decision to anonymise data was made as part of the ethics approval process. However, over the course of the study, the researcher questioned whether this was the correct decision for this study. In order to afford researchers the flexibility required to involve participants in decision making, this paper argues for a dialogic and situational approach to ethics regulation. Allowing researchers to delay key decisions would mean that researchers could involve participants in the decision-making process rather than purely informing them of the results of decisions made on their behalf.