Ethical standard setting in OCSS communities
Nurturing shared understandings of concepts and opening up knowledge in cross-disciplinary research
By Kersti R. Wissenbach
On September 22, GIG hosted its final hangout addressing pressing issues to enable inclusive, bottom-up Citizen Social Science practices in the most diverse contexts. The topics were identified throughout a series of conversation formats with makers, citizen [social] scientists and activists worldwide. As we are co-creating a publication aiming to capture the critical understanding and gloCal perspective of inclusion in engaged research between civil society researchers and academic researchers, these hangouts also provide a space for questions and discussion for everyone wishing to share their experiences in this publication.
This time we discussed the need for better ethical standards when seeking collaborations between academic and civil society researchers. We wanted to unpack the question of what is required to establish and follow ethical standards and enact deriving protocols in Open Citizen Social Science processes. This is, in any process where academic and civil society actors engage in shared, participatory research processes.
This topic, and the demand to pay more attention to it, initially emerged in a gathering with many international colleagues, most working in their local contexts, frequently in significantly remote settings. Subsequently, the discussion of ethics focused on the need for better documentation, incredibly inclusive documentation, to account for the voices of all those communities, for instance, those rooted in oral traditions, in this process. Accounting for all diversity, the need to ensure that research always impacts the communities on their terms was highlighted to need much more attention.
However, for this very hangout session, people who mostly do not work in the contexts of this initial group came together. Mostly being white researchers, the discussion, therefore, got a different twist, but a fascinating discussion emerged.
We had an intense conversation about handling ethics, where participatory research is rooted in academic institutions. Participants agreed on the essential fact that ethical procedures in universities are not equipped for participatory processes!
All participants were working on ethics in their respective academic participatory research projects. Given their attention to the subject matter, everyone knew that ethical standards or framework setting need to be an ongoing process and can never be fixed. As agile as participatory processes must be, and as much as academia is struggling to find its way into this, as much do ethical standards require the flexibility to be adapted to any potentially upcoming issue within a co-creative research process.
The dilemma? As with many topics discussed in the Global Perspectives hangout series, a fundamental challenge lies in the disconnect between institutional systems and on-the-ground realities and needs. Usually, university ethical review processes are developed at the beginning of a project and once approved. Thus, ethical standards become a statical artefact inscribed into an entire research process. Whilst this practice leaves room for critique in any project setup, it certainly does not work for participatory research processes nor working across, and in collaboration with, diverse actor groups and in challenging contexts that are exposed to rapid changes. To adhere to ethical principles in such processes, ethical standards must be kept alive through revisions and adjustments throughout the project.
As minimum criteria, therefore, feedback moments should be built into a research process at various points, whilst a communication stream for frequent communication among all stakeholders should be standard. More aligned with the nature of participatory research, which cannot be perceived as a linear process, an agile approach enabling the identification of ethical challenges by any stakeholder, at any time and in any way feasible for them would be required. Such an approach would be deliberated from specific moments and reporting mechanisms but acknowledge different understandings and framings of ethics across actor types and cultures and their respective political and other contexts. This relates to time, formats, and ways to engage and act upon identified ethical challenges. Moreover, ethical standards within a participatory research process are multifold, thus requiring different layers of actions as challenges can occur anachronical.
We discussed the example of consent. Ideally, re-consent moments should be built into a process to enforce frequent re-attention, and the opportunity to adjust the initial framing may situations require it. In an ideal case scenario, the possibility to identify and announce challenges with specific consent mechanisms should be fluid and possible to address at any point in a process. As challenges can occur rapidly and unexpectedly, they might relate to identifying risks for local actors, and it should be possible to make their resolution a priority at any time. This not only links to safeguarding the communities we work with but also enables a smooth project flow without getting stuck.
Beyond the lack of agility, other dynamics of participatory processes also hit the limitations of academic protocols. One of the participants, engaging youth in their citizen social science project, had the issue that the co-researchers could not be involved in all steps, such as publication writing, as this would have meant that they write about themselves. In such a case, existing data protection measures would not hold.
Another participant mentioned an example of a project which envisioned the handing over of cameras to school children to film certain situations from their perspectives. Whilst this is a common participatory practice, e.g. in international development collaboration contexts, mostly engaging adult participants, the crucial topic of the need to account for time and trust building in participatory processes came up. Many situations, not only in processes involving minors, do require time to build up trust and relations, time that is hard to calculate in conventional academic research frameworks.
Such situations do not align with the academic ethical systems, and ethical committees reportedly frequently lack the expertise to address such challenges constructively.
Rapid response mechanisms based on agile project designs would, therefore, primarily benefit process flows and the safeguarding of participatory research in and outside academic institutions.
Overall, the underlying driving factors for ethical standard setting in academic research, as much as in other research situations, such as big projects in international development cooperation, is to get the approval of the ethics committee rather than to secure ethical standards in the interest of safeguarding all actors, and their respective communities, engaged in a research process. It often appears to be a mechanical process rather than a profoundly humane act of prioritizing values. The end goal, thus, should always be to enable the safeguarding of all actors across all potentially accruing situations. Needless to say, this is impossible to pre-identify and plan by agenda.
It was also recognized that many topics that require attention are not new but appear ´too new´ to be structurally integrated into existing institutional frameworks. These relate to gender aspects and how to address them as much as to any questions around data ethics and responsible digital and data handlings processes.
Our academic participants perceived pushing for these shifts within their academic institutional boundaries as a form of activism. They are trying to push for changes through workarounds, through being verbal about it, etc., wherever given structures are not sufficiently responding to the needs of citizen social scientists and all actors involved in such participatory endeavours.
Also, we come back to challenges similar to those identified in other topics of the Global Perspectives hangout series. Enabling agile participatory processes in the ethical standard setting does require more time, more freedom as in less preidentified indicators, and the gradual crafting of expertise through the creation of spaces that allow for shared learning and exchange of challenges and learnings cutting across the very different actor groups that should be found in the Citizen Social Science. This should also include an open approach to failure. Whilst the recognition and sharing of losses has found prominent attention in particular communities of practice over time. It does not have any space in academia so far. The current academic and other research environments prominently lack funding schemes to enable such shared learning dynamics through fostering of community discourse and knowledge sharing across more diverse channels and inclusive formats. It has been noted that this situation began to shift in the UK, where interesting funding calls are slowly appearing, responding to the importance of building time to establish relationships with communities into research frameworks and respective funding schemes.
Moreover, funding distribution remains channelled through institutions rather than diversifying funding access for the various actors involved in citizen social science processes. Whilst this has a demonstrated negative effect on active participation, it also needs to be perceived as an ethical dilemma in itself! Participatory research, driven by an ethical framework, requires a severe catch-up with the understanding of ´professional research actors´ and, thus, how civil society should be engaged and on which terms. For instance, co-researchers are the topic experts in Citizen Science or Citizen Social Science. Identical financial conditions should therefore be a logical consequence. However, to date, this is not the case.
Lastly, the participants discussed the ethical dilemma of opening up standards, findings, and methodologies that might be misused. The example of right-wing groups using one’s data or methods was raised. On the other hand, opening up standards, data, and methods has also shown power in opening up locked-up data that is otherwise kept by large industries, not always in the public interest, such as in the case of the pharmaceutical industry. These questions have mainly been discussed in other communities, such as the open knowledge and access to information community. This reinforces the crucial need to create resources that enable the engagement and exchange of learnings across different communities.
In conclusion, academia, to be able to adhere to the ethical needs of participatory research, requires an open culture of engagement, a transparent and constructive approach to share failures, and, most importantly, much more agility – allowing for reactive research processes build on the safeguarding and equal treatment of all actors at any cost.