This paper recognizes the complexity of the debate on informed consent and discusses the importance of the ongoing process of consent for people affected by Huntington's disease (HD). Although written information may not be the most appropriate form of obtaining informed consent in qualitative research, it remains an important part of the ethical approval process for health research in the UK. This paper draws on a study in which the information sheet and consent form were specifically designed to help obtain (...) consent from people who may be impaired by the cognitive and physical effects of HD. The forms were developed by drawing on expert opinion and relevant literature and fall in line with recommendations from the Mental Capacity Act 2005 to encourage people to make their own decisions. The paper describes the feasibility of a method for obtaining consent as an ongoing process with patients affected by HD using information sheets and consent forms specifically designed for people with potential cognitive and/or physical impairments. In conclusion, this paper adds a pragmatic approach to the debate on informed consent by describing the development of a written information sheet and consent form being used in a current social research study. Particular emphasis is placed on the importance of written information being adapted according to the needs of potential participants. (shrink)

This paper poses questions regarding the ethical prioritisation in qualitative research studies on assessing a person's or a group's fitness to provide informed consent, arguing that this may have unwanted as well as desirable consequences, particularly in relation to rights of citizenship for socially marginalised populations who tend to be labelled vulnerable. Drawing on three theoretical perspectives (Arendt, Honneth and Bourdieu), it is suggested that the emphasis placed on a research participant's capacity to provide informed consent cannot be regarded solely (...) as a protective measure for ‘vulnerable’ groups, but is also bound up with their social positioning as socially ‘deficient’ according to liberal (classical and neo-liberal) models of citizenship. Participation in a qualitative study can be seen as a dimension of the civil and human right to freedom of expression, and this can be particularly important for those labelled vulnerable as freedom of expression is a precondition for recognition and parity of status. Nevertheless, the importance of informed consent is not rejected; instead, it is posited that the protective rights accorded to vulnerable groups in qualitative research need to be considered alongside other human goods, such as the promotion of voice, agency and active citizenship. (shrink)

This paper poses questions regarding the ethical prioritisation in qualitative research studies on assessing a person's or a group's fitness to provide informed consent, arguing that this may have unwanted as well as desirable consequences, particularly in relation to rights of citizenship for socially marginalised populations who tend to be labelled vulnerable. Drawing on three theoretical perspectives (Arendt, Honneth and Bourdieu), it is suggested that the emphasis placed on a research participant's capacity to provide informed consent cannot be regarded solely (...) as a protective measure for ?vulnerable? groups, but is also bound up with their social positioning as socially ?deficient? according to liberal (classical and neo-liberal) models of citizenship. Participation in a qualitative study can be seen as a dimension of the civil and human right to freedom of expression, and this can be particularly important for those labelled vulnerable as freedom of expression is a precondition for recognition and parity of status. Nevertheless, the importance of informed consent is not rejected; instead, it is posited that the protective rights accorded to vulnerable groups in qualitative research need to be considered alongside other human goods, such as the promotion of voice, agency and active citizenship. (shrink)