Ethical Issues in Doing Participatory Image-based Research with People with Intellectual Disabilities: Ethical issues and people with intellectual disbilities

By Sue Ralph and Pauline Prevett.

Published by The International Journal of Learner Diversity and Identities

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Article: Print $US10.00
Published online: March 12, 2014 $US5.00

The use of participatory photography in research raises complex ethical issues, especially when used with participants who are particularly vulnerable. Photovoice claims to give a “voice” to otherwise unheard groups of people, and the new emphasis on visual methodologies offers potential for the inclusion of people with intellectual disabilities as partners in research. This methodology raises a number of important issues which are discussed in this paper. The issue of power and control raises questions about how we make sure that the research is participatory and that the “researched” and “researchers” make decisions together, for instance by making sure that meetings are conducted in ways that all participants can take part and understand all the issues raised. The issue of giving informed consent, who provides this, and how do we make sure that all participants understand all the issues involved when taking part in research. By contrast, how do we meet the ever more stringent requirements of research ethics committees whose responsibility is to prevent people from being hurt by research, but who do not always understand or appreciate the positive aspects of people with intellectual disabilities being involved in research. Demands from universities for high quality publications can inhibit researchers from engaging in truly participatory research which uses images. Decisions about what and where to publish can be controversial. Finally, there are cultural and gender issues to consider when publishing the findings of photo-based research on the Internet, and providing other forms of public access to images. The safety of publishing images on the Internet, and the rise in cyber bullying are further issues which are raised in this paper.

Keywords: intellectual disabilities, participatory imaged based research, photovoice, accessible publishing

International Journal of Learner Diversity and Identities, Volume 20, Issue 2, March 2014, pp.41-49. Article: Print (Spiral Bound). Published online: March 12, 2014 (Article: Electronic (PDF File; 366.400KB)).

Sue Ralph

Visiting Professor, University of Northampton, Manchester, Lancashire, UK

Prof Sue Ralph is currently Visiting Prof at the University of Northampton, UK and Editor of the Journal of Research in Special Educational Needs (JORSEN). She has published internationally and has spoken at numerous national and international conferences.

Dr. Pauline Prevett

Senior Lecturer in Education, Education, Manchester, UK