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Accepted Paper:
What do we know about retinoblastoma? Exploring the space between epidemiological and (auto)biographical knowledge
Jed Stevenson
(Durham University)
What space remains for qualitative and ethnographic approaches in epidemiology and biomedicine? This paper explores this question from the point of view of a medical anthropologist who re-evaluated his relationship to the discipline when his child was diagnosed with a rare eye cancer.
Paper long abstract:
Healers and health professionals who take care as their vocation attend closely to their patients’ experiences, and in biomedical training ‘patient-centred approaches’ are routinely emphasised. Yet research in biomedicine remains dominated by methods and designs (e.g. randomised controlled trials) that effectively strip away lived experience and context in the interest of revealing supposedly universal knowledge about disease and treatment efficacy. What space remains for qualitative and ethnographic approaches? This paper explores this question from the point of view of a researcher trained in anthropology and epidemiology, who was compelled to re-evaluate his relationship to both disciplines when his son was diagnosed with a rare eye cancer (retinoblastoma).