[community] Thoughts and Critique of Ethics for Citizen Research and Co-design

[Foster, Julia]

* Similar ethical requirements/standards for the work with the participants (i.e. not the citizen researchers, but the people taking the survey or answering interview questions, etc.) -- e.g. informed consent, addressing risk, etc.; I'm still for regulation, as there are many questions that one could come up with that would result in undue harm to participants should someone try and answer it
* Robust training for the academic research facilitator (i.e. researcher who is supporting the citizen researchers with knowledge, guidance, etc. of research processes like survey design without bias, etc.)
* Templates for activities and learning modules that provide information about ethics to citizen researchers as part of the researcher process -- should be different levels of modules (e.g. simple vs more complex) depending on the research/ethics literacy of the citizen researchers
* Training opportunities for citizen researchers (e.g. interviewing skills, etc.) ideally run by other more experienced citizen researchers eventually 
* Where possible citizen researchers or future citizen researchers could be involved in creating the content/wording for the above

Julia

-----Original Message-----
From: community [mailto:community-bounces at lists.idrc.ocadu.ca] On Behalf Of Treviranus, Jutta
Sent: October 7, 2016 11:16 PM
To: Inclusive Design Community <community at lists.idrc.ocadu.ca>
Subject: [community] Thoughts and Critique of Ethics for Citizen Research and Co-design

We are proposing a Global Citizen Collaboratory that supports citizen research and citizen design (I’ve included a short summary below). One of the issues that has come up is how to manage ethics. The Research Ethics Board applications assume traditional roles for researchers and participants, require predetermined research plans and are not conducive to agile, iterative and responsive research processes, especially not of the kind we are proposing. 

In an attempt to find models I have discovered that there are a number of social scientists and humanities researchers, including many that practice participatory research and design, that have critiqued our formal institutional ethics processes. Some examples include:

"The ethical case against ethical regulation in humanities and social science research"
http://www.tandfonline.com/doi/full/10.1080/17450140701749189?scroll=top&needAccess=true
"The system of pre-emptive ethical regulation developed in the biomedical sciences has become a major threat to research in the humanities and the social sciences (HSS). Although there is growing criticism of its effects, most commentators have tended to accept the principle of regulation. This paper argues that we should not make this concession and that ethical regulation is fundamentally wrong because the damage that it inflicts on a democratic society far exceeds any harm that HSS research is capable of causing to individuals."

"Seeking university Research Ethics Committee approval: the emotional vicissitudes of a ‘rationalised’ process"
http://www.tandfonline.com/doi/full/10.1080/21582041.2013.769618?src=recsys
"Our critical discussion includes an account of indeterminate bureaucratic procedures and protocol which, despite their formally rational and rationalised status, were unreasonable, insidious and frustrating. Challenging ‘ethics creep’ and promoting critical debate underpins our discussion of the researcher’s experiences and responses when confronted with bureaucratic irrationality – arguably something that not only taxes researchers’ emotions and commitment but also threatens to ‘strangle’ HSS research and the research base more generally."

and even:
"Against the ethicists: on the evils of ethical regulation"
http://www.tandfonline.com/doi/full/10.1080/13645570802170288?src=recsys
"it is argued that increased regulation will not raise the ‘ethical standard’ of social science and will probably worsen the quality of what it produces.”

Does anyone have thoughts on how we should institute processes to prevent ethical risks that will pass muster with funders but won’t replicate the “evils of ethical regulation” in a citizen research initiative?

Thanks
Jutta

Summary of Proposed Initiative: 

The Global Citizen Collaboratory will co-design & build online infrastructure and resources that support “citizen” research & design. The Collaboratory will be globally unique -- empowering community members to employ research, data analytics & inclusive design to address issues of social justice, disparity & exclusion; & to remove barriers to equitable participation locally & globally. Community organizations will be equipped to respond to unanswered challenges overlooked by formal research. Many locally important issues are disregarded because they do not fit academic disciplinary classifications, research priorities, or impact measures. 

The infrastructure will be designed to be inclusive of community members with diverse abilities, languages, cultural preferences, technical literacies, ages & urban or remote locations. All services will be openly & freely available. Citizen research & design will be supported through the stages of: question formulation, research design, data gathering, multi-modal data presentation, analysis, dissemination, sharing, inclusive co-design, maker & civic “hacking” events, iterative improvement & “feed-forward” processes. The project will:

- help to foster an informed & engaged citizenry, that partner in social change;

- significantly diversify the coverage of research & knowledge to include community-identified but marginalized issues;

- promote greater inclusion & innovation,

- address knowledge gaps or disparities in who & what is understood.



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