Is it ethical (not) to conduct coproduced research?

By Katey Warran, Olivia Turner, Palani Te, Rachel Drury, Lynda Klem, Emily Davis, and Arunima Mathew 

Image: collaborative tablecloth created at co-production workshop for IMAGINED project

This month in our PATHS research group, we discussed the ethical challenges of conducting coproduced research in a landscape of increasing lack of resources and precarity. The current climate can make it hard to deliver coproduction. We asked: Is it still ethical to pursue coproduction if you cannot do it meaningfully? 

Navigating this complex question, we firstly explored how there are increasing challenges with funding bodies requiring co-production, but not always providing extra resources and time, or acknowledging the value of the co-production process itself. We discussed the following quote from Perry (2022):  

The danger is that this [advocacy by funders] exacerbates the ‘hidden politics’ of co-production and perpetuates acts of participatory justification that bear little resemblance to claims for co-production as a more democratic form of knowledge production (p.3) 

Together, we shared experiences of how increasingly the funding structures we work within can make it challenging to ensure that meaningful co-production aligns with the ethos that we strive for: equitable research. This led us to question whether co-production may sometimes feel like an unattainable ideal because of structural issues. Researchers strive to achieve projects where those who are the most marginalised are put at the centre of the research process. But alongside funding constraints, they face the challenges of an academic system and broader society that, ultimately, is structured around more traditional research models. These structures put people with lived experience at the heart of tensions relating to power and ownership of the research. 

Next, we discussed whether it is ethical to conduct projects in circumstances where there isn’t budget to pay people for their participation, both in relation to time, but also covering expenses. The structures for payment have developed in recent years, and many universities now offer pathways to pay people with lived experience. These systems can prove challenging to navigate, but there is increasing understanding from universities that people must be paid for their time. However, processes may be hugely variable and institution specific. And we questioned what this means from the perspective of seeking to conduct meaningful, relational research. Recent payment structures have put those with lived experience in a position akin to “employee” and the researcher as the “employer”. Previously, participatory research tended to see those participating as equal knowledge-makers who should be acknowledged for their time through honoraria. But we questioned: Does the “employment” payment model turn the interaction into a capitalist transaction that is contrary to the ethos of coproduction and relational participation? 

Further, the systems we work within often put researchers and those with lived experience into “roles” that mean researchers come to be perceived as symbolising institutional values. For example, researchers may be viewed as aligning with the hierarchical structures of universities, policies, and funding systems. This can be challenging to navigate if researchers feel at odds to the values of the institutions around them. People with lived experience may also encounter barriers to taking on leadership roles beyond a collaborator, due to symbolic boundaries and institutional constraints. Thus, these structures may also make it difficult for people to embody multiple roles and move through different spaces. For example, making it challenging for people working for universities to also meaningfully embody an identity of someone with lived experience.

This led us to ask: What does equity look and feel like? Is co-production always the answer? In circumstances where structural issues make coproduction very challenging, or if it isn’t feasible to do it meaningfully, we wondered if there may be other ways to include marginalised voices. While we recognise that we should always be seeking to include people with lived experience in all spaces and in every step of the research process, when this isn’t possible, we reflected on the importance of being an advocate for marginalised voices where they are excluded. 

Next, we discussed the norms of ethical approval processes, with one example being the standardisation of the de-identification of data in the research process. We asked: Is it always ethical to de-identify data and might there be situations where this may erode personhood? Are there dangers of the traditional “objectivity” and “transparency” of research, whereby people are often grouped together with names removed? We wondered whether de-identification may sometimes sit at odds with acknowledging the contribution of participants and to giving voice to individual stories. 

Another area of discussion was the assumptions of university systems regarding what counts as ethical in the research process, which are often based on medical and legal models. We explored how these assumptions may illuminate the disconnect in values and epistemologies between different disciplines, as well as in the academy versus real-world practice. For example, the arts and humanities may understand and prioritise interpretivist research, while medical research may seek to prioritise more positivist research. Although recognising that there are many variations in kinds of research conducted in different disciplines, we reflected on the challenges of disciplinary norms within ethical processes and how these may make coproduction challenging to carry out meaningfully.  

Finally, we ended our discussion by talking about the ethical responsibilities of telling someone's story who cannot tell their own, such as in situations where someone is non-verbal. A challenge was discussed regarding the need to translate and relay stories in written or verbal language in order for it to be “heard” and legistimised in society. This is a challenge because it is not the original language that the story has been communicated, which may have been expressed through actions, creativity, movements, or embodied understanding. 

As researchers, we have a responsibility to choose appropriate methodologies and ways of working, and to strive towards equity in the research process. This requires constantly questioning whether the processes we are working in are ethical based on both our own values and that of our disciplines and institutions. Further, this necessitates being critical of methodologies that may only on the surface provide solutions, rather than grappling with and acknowledging the incredibly complex ethical issues at the heart of striving for meaningful research. 

Stay up to date with developments from our research group by joining our mailing list.