Research involving people with a learning disability – methodological challenges and ethical considerations

The aims of the original study referred to in this paper were to explore the information needs of people with learning disabilities with respect to consent for genomic tests, and to identify ways of facilitating informed consent for such tests. In this research methods review paper, we consider the ethical issues involved in recruitment for our study and describe the process of recruiting vulnerable participants via gatekeepers. We discuss the ethical issues under the themes ‘freedom from coercion’, ‘disclosure of information’ and ‘competence’. In conclusion, we acknowledge the paradox that exists in learning disability research: the importance of protecting members of a vulnerable group against the need to include people with a learning disability in order to gather the best possible evidence. However, a focus on wider inclusion will result in a more robust body of knowledge concerning the health and welfare of people with learning disabilities.