Browsing by Author "Harasym, Patricia Marie"

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    Seeing Biomedically: the Routine Grounds of Translation in Patient Oriented Research
    (2014-01-10) Harasym, Patricia Marie; Heyman, Richard David; Schneider, Barbara
    In this dissertation, I show how two doctors perpetuate social divisions and reproduce biomedicine as an institution of social control when taking a patient oriented approach to translational research. The two doctors collected data directly from patients and privileged patients’ personal experience of disease. One doctor presented the patient’s authentic voice of experience at an international medical conference. The doctors considered themselves dedicated to normalizing patients and preventing the difficulties and challenges of social exclusion. Yet, an ethnomethodological analysis of transcripts of conversations between the two doctors and between one of the doctors and a patient reveal that the two doctors normalize and marginalize patients they recognize as “disease damaged”, concealing patients’ lived experiences of social inequality. The doctors’ research protocol encourages and facilitates collaboration between patients, their attending doctors and the research team. A patient, who was a practicing physician before she had the disease, is the Principal Investigator’s Research Assistant. The Principal Investigator treats his Research Assistant as an expert patient and as a physician colleague. The PI takes a patient oriented approach when collecting and analyzing the patient’s descriptions of her disease experience. The patient speaks for herself as the voice of experience at an international medical conference. A close analysis of the transcripts reveals, however, that given their accountabilities as translational researchers to the scientific community, the doctors exclude permanent disease damage as a researchable topic. The doctors sympathetically acknowledge the consequences of disease damage, express empathy toward, patients they regard as a “disease-damaged”. Yet, by viewing these patients’ experiences through the translational research lens, they also produce social inequality. Patient oriented translational research reproduces cultural knowledge about biomedicine as an institution of social control and perpetuates social divisions.