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Accepted Paper:
Collaborations, confounders and ethical misgivings
Maria Berghs
(De Montfort University)
In this paper, three research sites (Sierra Leone, United Kingdom and the online space) are examined to illustrate how collaborations can be unethical despite ethics of care frameworks, how ethics can confound research methods and theory, and how ethics can develop as critique.
Paper long abstract:
In this paper, I discuss several research sites noting limitations of collaboration, confounders and ethical misgivings. In co-produced and participatory research conducted with the voluntary sector in Sierra Leone, research was openly welcomed on the neglected public health issue of sickle cell. The research aims and objectives were also ethically set by the female voluntary sector partners but there were limitations of ethics of care when research data involves how partners, policy-makers and practice deal with violence socially. In a second site. in the Midlands, during the COVID-19 pandemic with longest lockdown and highest rates of deaths, we were asked to respond to urgent issue facing sickle cell patients in NHS care but our experiences with funders, unethical recruitment and results confounded - in that it was illustrative of a much wider systemic issue to do with racism, lack of care in NHS and limitations of the very theory and methods we were using. Lastly, I turn to the online space as ethnographic site to highlight ethical abandonment and loss. There ethical misgivings about ableism and how the disability community have been articulating those concerns during the COVID-19 pandemic, illustrate critique and how a new empirical-ethics is developing independently.