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The challenge of research with cognitively impaired people is complicated by the poor fit between ethics boards and discipline-specific protocols. We invite scholars to explore new ways to conduct ethically and morally responsible ethnographic fieldwork involving cognitive impairment.
Anthropologists have been long preoccupied with ethical conduct during field research, to the point of it becoming a reflexive aspect of their work. However, research involving participants at the beginning and end of life faces particular ethical challenges. This is further complicated - both ethically and bureaucratically - if these stages of life are accompanied by cognitive impairment (e.g., autism; dementia).
Research involving cognitively impaired people has become highly regulated by agencies beyond our discipline. Given the legal status of regulatory and oversight bodies in many countries, the ethics review process can force a researcher to drastically alter the proposal, threatening disciplinary specificity. Ironically, this can sometimes further marginalize vulnerable, cognitively impaired people as human research participants. This panel will explore the challenges and predicaments of working with cognitively impaired populations at the beginning and end of life. We will ask how approaches can be made more inclusive, despite limited or lost capacity for informed consent. We will also explore how consent and the resulting ethnographic stories can be reconceptualised in this context. Further, acknowledging that researchers might share some ethical conundrums with those caring for cognitively impaired people, we will explore how relations with participants are established and maintained. This might include the management of emotional labour, situations involving compassion fatigue or anticipatory and postmortem grief. We invite scholars in this research area to think creatively about ethically and morally reenvisioning ethnographic fieldwork, given the timeliness of these issues and their relevance to disciplinary debates on ethics.