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Rare Disease Track
28th November – 10:00 – 11:15 – Session II

The promise of precision: improving communication and ethos in Precision Medicine
Developing precision medicine is a strategic aim for governments, research funders, industry and researchers. It is an appealing prospect for patients as it suggests treatment specific for their condition. However, there is a gap between expectation and delivery in terms of achieving scientific progress, clinical application and end-points which meet patient needs. In this session, we will focus on the ‘communication’ which surrounds precision medicine which has typically focused on the promise it both holds out and depends on, raising expectations among all parties. ‘Communication’ is here broadly conceived to encompass both the rhetoric which stakeholders deploy with respect to precision medicine and consultations between patients/clinicians.
The quality of communication so conceived influences precision medicine’s ‘ethos’ or moral quality, which is constituted by the reasons for participants’ words, decisions and actions. We are interested in how this ethos takes form in the interactions, practices and economics of precision medicine, and especially in communication about, the mode of recruitment to and conduct of clinical trials involving precision medicines. Investigation of these questions requires an interdisciplinary endeavour incorporating humanities, social sciences and medical sciences disciplines alongside close partnership with patient organisations and clinicians. With a focus on cancer and rare disease – especially Cystic Fibrosis – this session will provide a critical mirror to the European and global aspirations in this field.
Chair

Alastair Kent
Formerly Director of Genetic Alliance UK
Panel

Prof Tim Maughan
University of Oxford

Prof Joshua Hordern
University of Oxford Healthcare Values Partnership

Prof Stuart Elborn
Imperial College London

Dr Janet Allen
Dr Janet Allen, Cystic Fibrosis Trust
Discussion: Q&A