Researching ethically with those deemed ‘vulnerable’
Helen Chaudhuri, Stephen Connolly, Nick Hodge, Ann Macaskill, Thomas Price, Lisa Reidy and Amanda Willcox
This is a collective symposium presented by members of the Sheffield Hallam Autism Research Partnership (SHARP) – a cross-university collaboration of those interested in autism research
Negotiating research ethics approval can be a challenging and frustrating process for those working with groups of people deemed ‘vulnerable’. This includes research with children, refugees, the elderly and disabled people. This session will begin with an introduction to some of the key ethical concerns, for those researching with participants deemed ‘vulnerable’ through being disabled, that are currently noted within the research literature. Then, using case study examples from research with autistic people, members of SHARP (Sheffield Hallam Autism Research Partnership) will identify some of the issues they have encountered when seeking ethical approval. These are likely to include the researcher and reviewer working within very different understandings of autism and a blanket requirement of proxy consent for all autistic participants, even if they are professional people themselves. Those working within participatory and emancipatory paradigms, in which researchers are mandated to work collaboratively with participants at every stage of the process, find themselves trapped within a catch-22. Within these paradigms participants should be involved at every stage of the process. This includes shaping the methodology and identifying and responding to ethical concerns. Ethical approval, however, has to be secured before engagement with participants can occur, thereby disrupting a truly participatory approach.
Following the case study illustrations, Professor Ann Macaskill, Head of Research Ethics, at Sheffield Hallam University will chair a discussion with delegates during which we will problematise, and attempt to find solutions for, the ethical concerns that arise from research with ‘the vulnerable’. We intend that an outcome of this discussion will be the drawing together of some key principles that will then support both the researchers designing such projects and those who will conduct the ethical review.