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Ethical challenges and complexities of including people with intellectual disability as participants in research

Knowingly or not, every researcher submitting a proposal to a research ethics committee does so in the shadow of the Willowbrook study and other similarly infamous experiments conducted with individuals who were vulnerable because of their limited cognitive capacity and/or being in a powerless position (e.g., prisoners of war) (Beecher, 1966). Willowbrook is of particular relevance to the focus of this article because children with intellectual disability were infected with viral hepatitis without their knowledge, and the nature of the informed consent obtained from their parents was questionable (Beecher, 1966). Revelations of similar horrors that had occurred with prisoners of war were the catalysts for the development of the Nuremburg Code of 1949 and the World Medical Association Declaration of Helsinki in 1964 (World Medical Association, 2004). This declaration continues today to form the basis for ethical guidelines proposed by various government bodies, such as the National Health and Medical Research Council (NHMRC) in Australia, the National Institutes of Health in the United States, and the National Health Service in the United Kingdom. The aim of this article is to consider the implications for research involving people with intellectual disability – a vulnerable group – of ethics committees’ attempts to apply these guidelines. The issue explored is whether committees are becoming increasingly conservative in their decisions and approaches, with the potential to exclude at least some people with intellectual disability from research. Protectionism or discrimination?