Is everyone on board and does everyone agree? Ethical issues in human rights research with people with mental health issues and people with learning difficulties

In recent years, there has been an expansion of knowledge and consensus on ethical ways of ensuring informed consent and research participation of people with mental health problems (Tew et al., 2006) and people with learning... [ view full abstract ]

In recent years, there has been an expansion of knowledge and consensus on ethical ways of ensuring informed consent and research participation of people with mental health problems (Tew et al., 2006) and people with learning difficulties (Stalker, 1998). This includes more nuanced and complex aspects of research ethics for these two groups – from ethical participation of people with profound and multiple learning disabilities in research (Boxall, 2010) to ethical standards for research conducted by mental health system survivors themselves (Faulkner, 2004), for example. Ethical requirements for conducting human rights research (particularly in the international context) are less clear; the rationale for such studies is to explore breaches in human rights, therefore surpassing requirements for prior ethical approval (Amon et al, 2012). The built in assumption is that any attempts to reveal human rights violations are likely to be suppressed (ibid.).

This presentation is based on an example of a human rights research study on legal capacity of people with mental health problems and people with learning difficulties in Kenya, conducted for an international human rights organization. Using this example, the author examines the complexities of ethical human rights research with people with learning difficulties and people with mental health problems. The complexities explored won’t solely focus on the research process, but also the potential impact of such human rights research (including legal advocacy and litigation).