Tag Archives: informed consent

Reciprocities of Trust

From Informed Consent to Reciprocal Exchange

At the heart of working with communities, indeed anyone, is the issue of trust. In this piece I am setting down some of my thoughts about how collaborative practice can be built upon reciprocities of trust and why that is different to some of the established models I have encountered in research and practice stemming from the ethics of informed consent and how they are often applied.

At the root of how someone behaves is their ethos – not a checklist of ‘ethical guidelines’ to be adhered to, but the fundamental characteristics of who they are as well as why, and how, they do what they do. A person’s ethos is not merely a set of changeable beliefs but the core that directs their actions on both conscious and subconscious levels. If a person’s own ethos is not in alignment with the ‘ethical’ guidelines they are required to follow for a project, then it seems to me that their adherence to an ethical framework and use of informed consent is unlikely to be more than an instrumental procedure that does not necessarily guarantee the reciprocity of trust that is implied.

In my experience, the mechanisms by which trusted relationships can be established between participants in a project have to be tailored for each specific instance. Sometimes it is possible to use well-honed mechanisms and processes whereby each party can validate the others to establish a basis of trust on which to proceed. In other situations individuals have to build up trust through demonstrations and actions that directly establish their trustworthiness to each other. How we create these kinds of reciprocal relationships is critical to our ability to realise cooperative and collaborative creations of value between people.

Below are some notes on formulations that trace my own path from informed consent to reciprocal exchange. My reason for writing this is not to suggest that all uses of informed consent are wrong or badly applied, but to articulate and explore my own approaches to formulating something analogous to the rigour of well-applied informed consent that works within the particular contexts of independent engagement practices.

Informed Consent

Since first entering the world of academic research in the late 1990s I have become increasingly uncomfortable with the mechanisms and procedures of how I have often encountered ‘informed consent’ being applied. My feeling has always been that the language of ‘informed consent’ tends to pre-suppose a top-down hierarchy, where research ‘subjects’ are studied, acted upon or have information or knowledge extracted from their situation without always the concomitant return. The principle of engaging people in research on an informed and consensual basis is clearly fundamental to any practice that strives to work on an equitable basis. However, often the processes and application of ‘ethics’ appear instrumental and unsound – focused more on limiting institutional liability than truly safeguarding those whose consent has been sought. To me this smacks of an acceptance, even comfortableness, with unbalanced power relations that extract value in one direction only.

As an artist working independently of (although often in partnership with) institutions I have rarely been subject to the requirement of seeking approval for my work from an ethics committee or having to justify my methods and approach in this way. These structures simply do not exist. In their absence artists and arts organisations have to develop their own idiosyncratic ways of working that reflect ‘ethical’ positions and best practices. As such these are often hard to evaluate because they are not so codified or even designed to be measured in the ways that institutions are obliged to provide evidence of to comply with policies, law and other conventions. Both approaches have much to offer – standards can be agreed upon and evaluated against, whilst the dynamism of more individual and idiosyncratic ethos-driven processes can be more fluid and adaptable to specific situations and contexts.

In 2008 a four year national programme, Beacons for Public Engagement, involving over twenty UK universities started which sought to address historic imbalances between research culture and the public (and often those being studied) in order to “change the culture in universities, assisting staff and students to engage with the public”. The programme defined engagement as “a two-way process, involving interaction and listening between all parties, with the goal of generating mutual benefit.” Changing attitudes and behaviours within well established systems can only be achieved over long timeframes, therefore it will be interesting to see whether any sustained evaluation of this programme is undertaken, for instance at five or ten year intervals, that may demonstrate not only the value to universities of engaging with the public in mutually beneficial ways, but also to what extent communities have been able to identify and articulate value from such engagement too.

The emergence of the Free, Prior & Informed Consent (FPIC) model of working with indigenous peoples (and enshrined in 2007’s UN Declaration on the Rights of Indigenous Peoples) is also a hugely significant development along these lines, applicable in the development of trusted relations between any parties where there is a discernible imbalance of power.

Informed Disclosure

This concept emerged during the early stages of a collaboration with Dr Lizzie Coles-Kemp on what became the Pallion Ideas Exchange. This project was sited within a deprived ward of the city of Sunderland where, in the face of massive benefits change and the erosion of the welfare infrastructure on which this largely deindustrialised area depends, an intergenerational group of locals had expressed a desire to create their own online ‘knowledge network’ to address the growing lack offered by the State. As we explored with the group what they meant by this, it became apparent that we were looking less at a database of fixed information points and much more at a process of documenting and sharing what people knew and had experiences of that could be shared with others who needed help with specific problems.

Growing out of the VOME research project led by Lizzie, it was obvious that this process would need to engage with the use of social media as well as the web and mobile technologies at various levels. Among the general issues relating to privacy that affect any use of social media and the internet, there are ofttimes specific reasons where the identification of individuals within localities and communities presents proximate dangers. In Pallion this was an issue that required the close attention of all participants as, either through forgetfulness, ignorance of the potential consequences or a kind of carelessness, there was clearly potential for individuals to experience harm (such as benefits sanctions as well as other issues) as a result of participating or sharing what they knew. Lizzie and I attempted to address this in the project through reiterating a rubric of ‘informed disclosure’ at each workshop and meeting, and building prompts and reminders into the tools we co-designed and created with the group to consider potential consequences before sharing. As part of a generic toolkit which was developed out of this project we also created a visual guide to choosing online services that works as a perception axis between private/public and open/restricted. This was a practical attempt to help someone think through the consequences of choosing and using different online services and social media before adopting them, embedding the concept of informed disclosure at the starting off point as well as along their online journey.

For me, the principle of informed disclosure went much further than this pragmatic example; it encompassed how my colleagues at Proboscis and I collaborated with Lizzie and her co-researchers as well as the community in Pallion. It meant being open about what we each hoped to achieve from the project, what we were each getting from it as well as what we were each putting into it. It meant being open about our roles as paid professionals engaging with unpaid volunteers in a community that has experienced multiple deprivations since the UK Government agreed to the closure of the key industry in North East England back in the early 1980s – shipbuilding – and the consequent disappearance of the subsidiary industries that relied on it resulting in cross-generational long-term unemployment, loss of skills, hope and aspiration for the future. This kind of openness was crucial to establishing trust and maintaining it not only during the project but long afterwards too.

Engaged Consent

Whilst in Reite village in Papua New Guinea with James Leach during November 2012,  James and I wanted to push the concept of informed consent further as we co-designed some initial TEK Notebooks with several community members. This was an initial experiment intended as a proof-of-concept for the discussions we had had with James’ longterm Reite collaborator, Porer Nombo, both before and following our participation in the Saem Majnep Memorial Symposium on Traditional Environmental Knowledge at the University of Goroka in PNG the previous month. A number of the delegates had discussed their approaches to informed consent and working with indigenous people in PNG in their presentations, some of which were really admirable.

Once in Reite village itself, we felt that it was important to establish what was actually meant by consent in this context – and this then informed how the whole experiment was shaped. The notion of engaging the consent of the participants who filled in the TEK Notebooks was relevant not just to demonstrate our ‘ethical’ approach to outsiders (such as academic and NGO colleagues), but was woven into the nature of the prompts used in the notebooks themselves. The participants were asked not just to give their consent to their notebooks being digitised and shared online, but also to indicate what rights they had to share the knowledge they were including, essentially linking back to the community and heritages of which they are part. This seemed a crucial way to ensure that what was being done was relevant and respectful to the internal relationships of the communities of Reite and Sarangama (a nearby village some of whom also took part). It provided declarations that the kinds of knowledge being shared were not secret or privileged, were given freely and with a description of the author’s right to do so. The prompts themselves emerged out of discussions with a number of community members (in which I was mainly an observer) which provided a strong sense that what we were doing was truly co-created, emerging from a process of open collaboration.

As a time-limited experiment, our formulation of engaged consent was necessarily only partly developed but points, I think, to how we can do research with people, not just upon them.

Reciprocal Exchange

Since completing both the Pallion Ideas Exchange project and following on from my first Indigenous Public Authoring field trip to Reite I have found myself moving more and more towards articulating my personal aim of ‘reciprocal exchange’ with the people and communities with whom I work. My goal in entering into collaborations is to learn from others, experience things I cannot (or would not) make happen on my own – to stretch myself in a continuous process of becoming. It would be a selfish or at least self-centred process without the sense of obligation to reciprocate with others, to offer whatever knowledge, skills and experiences I have in a way that enables others to adopt and adapt them for themselves.

Perhaps this is why I have often felt uncomfortable with the use of ‘ethics’ and ‘informed consent’ as I have seen and encountered it applied in some research contexts. My research work is not based on creating objective studies so much as engaged directly in working with people to effect social and cultural transformation. For this I believe that more is needed than just consent – it requires active participation, mutual trust and reciprocal exchange.

This value of reciprocal exchange also underpins the work I have been doing with Oxford Brookes University on developing a process of engaged participatory design for a new kind of rehabilitation measurement tool which survivors of traumatic brain injury (TBI) will be asked to use to share their rehab experiences. Previous methods and tools have primarily focused on what clinicians and researchers needed to know. However we have started from the point of also trying to understand what benefits may derive from the activity for the TBI survivors themselves – as they see it – and how the process of contributing information to help clinicians better understand their experiences can be part of their own rehabilitation. This is a challenging step in developing tools within a medical context – embedding the patient’s perspective at the heart of designing a process intending to learn from their information and data is not as common as many may think.

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James and I are now gearing up for the next stage of our Indigenous Public Authoring collaboration : a field trip in early 2015 (and another in 2016) back to Reite to work further with community members and explore methods and tools appropriate to their situation and context – ultimately aiming to put together a kind of simple, adaptable toolkit and process for recording and sharing traditional environmental, cultural and ecological knowledge that has been co-designed and co-created in situ with the community.

At the heart of this project, for me, is this question of reciprocal exchange – what is each participant in the process bringing and taking away? How does it bind us into relationships of exchange and obligation to each other? The disparities of our ways of life and the worlds we inhabit mean that establishing an equitable relationship is unlikely to be based purely on material exchange – as it might be in the industrialised world of goods and money – although undoubtedly this will be involved. More likely, it seems to me, an equitable relationship will emerge out of shared acceptance of obligations to each other, and the articulation of these obligations through processes of collaboration and making things.

And the only material that these relationships can be forged with is trust.