Archival Ethics from Below: The Case of the Uganda Cancer Institute's Records
Dr Marissa Mika, University of Global Health Equity
Wednesday, 20 November 2019, 4pm to 5.30pm
Ethox and the Wellcome Centre for Ethics and Humanities are based at the Big Data Institute, University of Oxford, Li Ka Shing Centre for Health Information and Discovery, Old Road Campus, Oxford OX3 7FZ. The talk will be held in seminar room 0.
This talk was originally due to take place in February and has been rescheduled.
At the Uganda Cancer Institute, lines often blur between past and present, sickness and health, life and death. Founded in 1967 as a small chemotherapy clinical trials facility in Kampala, today the Institute’s 100+ beds serve a population catchment of over 40 million living in the Great Lakes region of Africa. The Institute houses the only continuous collection of patient records documenting cancer treatment and care on the African continent. As this Institute gets torn down and built back up, so too do longstanding practices of cancer research and care. And with all of these changes at the Institute, there are major questions about what to preserve, what to discard, and what to celebrate. And in particular, what should be “done” with the institutional records and patient records at this site? This talk considers the temporal, methodological, and ethical challenges of preserving patient records at the Uganda Cancer Institute.