Paper short abstract:

When a participant can remember and narrate their experiences, they are seen as owning this information. But when experience cannot be filtered through memory, but is observed and recorded directly by the researcher, biomedically informed ideas about what constitutes participation are problematic.

Paper long abstract:

When a research participant can't remember their past experiences the researcher becomes more directly involved in the act of remembering - information relating to the experience is not filtered through the participant's memory. However documenting experiences in-the-moment poses an ethical challenge for the researcher. The experiencing person does not exist in isolation, but is involved in interaction and relationship with others. This relational nature of experience is difficult to fit into the dominant understanding of the research participant as individuated, self-determined, context-independent, and fully able to remember their past. A biomedically-informed vision of research sees participation as occurring entirely within the cognitive and bodily boundaries of the individual, and this shapes how ethical review boards approach the issue of consent. When a participant can remember and narrate their experiences, they are seen as unproblematically owning this information - even when their narrative may feature information about other people. However this becomes an ethical problem when the act of remembering an experience is carried out by the researcher, not the participant, and so information about other people in the participants' life is recorded directly by the researcher, and not filtered through the participants' memory. Drawing on research into the ethics of ethnographic research with people who have dementia and who lack capacity, we discuss this issue with reference to different understandings of personhood and the concept of consent, and call for a more pragmatic approach to the ethical challenges of ethnography in care institutions.