Rare Disease Track

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

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.


 Alastair Kent

Alastair Kent

Formerly Director of Genetic Alliance UK


 Tim Maughan

Prof Tim Maughan

University of Oxford

Joshua Hordern

Prof Joshua Hordern

University of Oxford Healthcare Values Partnership

Stuart Elborn

Prof Stuart Elborn

Imperial College London

Janet Allen

Dr Janet Allen

Dr Janet Allen, Cystic Fibrosis Trust

Discussion: Q&A