Ethical considerations and dilemmas when undertaking ‘inclusive’ research with vulnerable people
Educational and other social research naturally involves serious consideration of ethical principles and practices. Indeed, studies involving vulnerable people (children, people with learning disabilities etc.) begins with ethical principles. These include ensuring the research furthers the interests of participants, who understand the nature of their contributions and how they inform the research. This paper explores the issues inherent in undertaking this kind of ‘inclusive’ practice with adults with learning disabilities. It discusses the need for effective information and how this may be mediated via accessible language, the involvement of intermediaries know to potential participants, and possible spoken explanations.
on the issue of ‘informed consent’, where the decision to participate (or not!) should be made, on ethical grounds, solely by the potential participant. In this case the ‘gatekeeper’ (defined later in this paper - but in brief, a person who facilitates access to research participants), considering the best interests of the person in their charge, heavily influenced the decision. The second vignette relates to someone who independently expressed a wish to participate, but who did not have the required experience or capability to understand the research, and the way this was dealt with ethically. As a conclusion, the paper asserts that resolving these dilemmas showed that treating people ‘ethically’ requires a great deal of flexibility, and considerations beyond what appear to be inviolable principals.
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