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Seminar: Participation and partnership? Experiences of engagement in precision oncology
September 27, 2019 @ 10:30 - 12:00
Seminar organized by the Centre for Medical Science and Technology Studies
Professor Sarah Cunningham-Burley
University of Edinburgh
Precision medicine’s mantra of participation and consumer driven health care constructs particular spaces for engagement and responsibilities around what it means to be a patient in the genomic era. Yet, participation and partnership enact processes of inclusion and exclusion in the crafting of a future when disease – in this case cancer – is expected to become more controlled through ‘the right treatment for the right patient at the right time’. Drawing on a four year project focusing on developments in genomic medicine and cancer, this paper explores the multiple ways in which people affected by cancer negotiate and experience spaces for participation, including clinical encounters, representative activities and through sharing information in online fora. In so doing, we address how those most directly affected by developments in genomic medicine, and the data practices upon which they depend, attend to multiple uncertainties for themselves as individuals and as part of wider collectives, however loosely drawn. We will examine how genomic information is (or is not) sought and shared across these spaces and explore how people make sense of their disease at the intersection of research and care
Sarah Cunningham-Burley is Professor of Medical and Family Sociology and Dean of Molecular, Genetic and Population Health Sciences: Edinburgh Medical School, University of Edinburgh. She is also the University-wide lead for Equality, Diversity and Inclusion. She currently holds a Wellcome Trust Senior Investigator Award, ‘Transformations and Translations in Patienthood: cancer in the post-genomic era’, jointly with Professor Anne Kerr, University of Leeds, and is Director of a new Centre for Biomedicine, Self and Society, which is supported by a Wellcome Trust Discretionary Award. She led the public engagement research strand for both the FARR Institute Scotland and the Administrative Data Research Centre Scotland, focusing on using dialogue and deliberation to understand public perceptions and interest in data intensive health research and using engagement to support good governance.
September 27, 2017, at 10:30-12:00, in room 5.0.22 at CSS, Øster Farimagsgade 5A, building 5
Everybody is welcome!