How is your ethics committee dealing with inclusive research?

Social work is a social justice project and in our teaching we alert our students to structural factors in our cultures and societies when they have limiting implications for the opportunities of particular groups. This is inherently linked to the empowerment project. Whether for homeless young men, women affected by domestic violence or people with a mental illness we are committed to advocating for their access to services, supporting their development of their own confidence to speak up and working for social change that validates their right to be heard.

In the study of disability researchers have made important progress in the inclusion of these excluded voices. As a social work researcher this is really exciting stuff. The voices of children, the intellectually disabled and other ‘vulnerable’ people will increasingly be heard and included in the knowledge base of western social research.

Historically ethics committees have been inclined to protect these people from research on the basis that they may not have the capacity to give consent (children, intellectually and mentally disabled) and that they require protection.

There is a power disparity, at least potentially between any researcher and their participants. The researcher establishes the parameters of the research including its conceptualisation, how that conceptualisation will be operationalised and what and how it will be measured or characterised. This is equally true for quantitative research where values are embedded in statistical processes, choice of variables and measures, prior research and research procedures. It is more obviously true of qualitative research though more acknowledged.

Managing this power disparity is of concern to ethics committees. In research with aboriginal Australians these can be referred to aboriginal ethics committees. If those other voices are going to be included in research and thus our knowledge base, our ethics committees will need to be able approve research in which they can be included and their safety to do so ensured.

One of the issues that arises from this is that of consent. Typically we have a participant information statement and and a participant consent form. While ethics committees encourage us to use accessible language they still tend to be formal, they require a signature and of course literacy.

Some alternative ways of giving consent have emerged including: if the person turns up to participate in a research activity, they are deemed to have consented. This would be predicated on them knowing what they were getting themselves in for. This can be done by verbal explanation and consent collected by voice recording. This recording can include any discussion or clarification that takes place.

Instead of expecting people to hold onto their participant information statement, the purpose of the research can be re-stated at each contact and commitment to not affecting any service, and freedom to withdraw at any time also re-iterated at each contact.

What strategies for inclusion have been approved by your ethics committee?