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

[Treviranus, Jutta]

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.