Ethical challenges in researching in group homes for people with severe learning difficulties: shifting the balance of power

Abstract

Abstract Our aim in this paper is to open up debate about informed consent. We do this by presenting stories from group homes where staff have frustrated our research efforts and marginalised the interests of people with severe learning difficulties. We problematise normative ethics and argue that in some circumstances the basic principle of informed consent should be waived for employees of human service organisations. We maintain that, in such circumstances, researchers and an organisation’s senior managers can still act in a manner that is consistent with the broad aims of ethical regulation. We consider the role of Research Ethics Committees and suggest that in order to fully consider the conflicting interests of multiple stakeholders, the application of different ethical theories is required. A requirement for making balanced ethical judgements is to see outside the extant dominant view of ethical research standards and behaviour. Keywords: ethicsinformed consentgroup homespowerresearch committees Notes 1. Although the process of gaining consent can be oral or written, it generally takes the form of written informed consent (Corrigan 2003). When we write ‘informed consent’ we are referring to written informed consent and use oral or verbal consent when necessary. 2. RECs may also be referred to by other names, such as institutional review boards or institutional ethics committees. 3. The withdrawal of consent conditions given to participants can seem worrisome to the researcher. As well as having the right to withdraw from active participation in the project at anytime, participants can further insist that data arising from their participation are not used in the research project provided that this right is exercised within four weeks of the end of their participation in the project. Should a participant exercise this right after a prolonged period of fieldwork, then a considerable amount of time, effort, and public money could be wasted. 4. The house supervisor is given the lead responsibility to obtain proxy consent for the service-users, in part to avoid any accusations of coercion from researchers with an obvious vested interest in the research. However, employees do not have neutral interests and a disinterested employee is in a strong position to talk the family member/guardian out of giving consent. 5. This ‘tale’ threw up a further ethical dilemma for us. Our UHEC stresses the importance of written informed consent, a principle that was sometimes hard to adhere to in practice. Given that some staff were not going to sign the consent form, we pragmatically accepted their verbal consent. This illustrates that doing research often requires being flexible with the guidance that one has been given. 6. Most direct support staff do not hold a formal qualification and are not, as we pointed out in the main text, professionals in the same sense as a social worker, doctor or psychologist. Two aims of the ASSID document are to draw attention to the high level of competence required by direct support staff and contribute to the ‘professionalisation’ of the workforce. 7. This does not excuse unauthorised practices that are harmful to the service-users. Such practices would still be dealt with by following the organisation’s procedures.