It’s your decision: Negotiating consent for research

Objective/Purpose A fundamental requirement of ethical research is the negotiation of informed consent with participants. However what makes consent ‘informed’ can be contested, particularly with people whose decision making capacity may be uncertain. The ‘Who decides?’ project aims to explore how people with learning disabilities are supported to make everyday decisions, and how their ‘mental capacity’ to make decisions is assessed. This presentation will turn the lens on the researcher and discuss how consent to participate in the study was negotiated with a sample of people whose capacity may have been in doubt. It will also present examples of ways in which people were given information which supported them to decide whether to take part in the research for themselves. Method In England the Mental Capacity Act 2005 provides guidelines for researchers working with people who may lack capacity to consent to research. This project modelled the principles of the Act in negotiating consent for people with learning disabilities to participate. This was undertaken on a person centred basis in order to reflect the individualised communication needs of participants. A reference group comprising people with learning disabilities gave advice on the production of accessible materials for participants. The study sample included people with learning disabilities and their support worker(s), with the research following three stages for each participant. In stage one three introductory ‘getting to know you’ meetings were used to develop accessible research materials that met the participant’s individual communication needs and to assess their capacity to consent to take part in the study. Stage two involved the video-recording of participants and their supporters while they engaged in their everyday tasks, with a focus on decision making acts. In stage three participants reviewed videos and were invited to comment on the recordings. The focus of this presentation is drawn from field notes recording the experiences in stage one above. Results and Conclusion Drawing on emerging findings this paper will present practical examples of how consent may be properly negotiated and discuss some of the challenges to researchers in accomplishing this. Participants here have responded better when information about the research is presented in an innovative way, using props and ‘live’ examples of observations. This approach made the implications of consenting to the project more understandable and I would argue therefore more ‘informed’ I will discuss how support workers, in their role as gatekeepers, played an important part in negotiating consent but also reflect on how their position may have compromised accepted principles of ‘ethical’ research. Overall I will argue that adopting a flexible research methodology could allow for those previously considered incapable an opportunity to share their views in social research.