Patient Participation in Genetic Research

I have received the invitation below in relation to a workshop to be held on 29 September 2016 at the Wellcome Institute, situiated between University College Hospital and Euston station.

There is a genetic element to oesophageal cancer that makes up a proportion of the risk (how much is a moot point), so if anybody is interested in attending, the details are below:

Prioritising Participation: Patient Involvement and Experience in 100,000 Genomes

A half day workshop in London, called Prioritising Participation, invites rare disease advocates with an interest in the work of 100,000 Genomes, to help decide research priorities on patient involvement.

This will be an interactive day, exchanging views and ideas on the social and ethical aspects of participation in genome sequencing and identifying priorities for research. It will take place on 29 September 12:00-16:30 at the Wellcome Trust on Euston Road, London.

The workshop is organised by the Patient Involvement and Experience group, appointed by the 100,000 Genomes Project to undertake research with patients and families on the experiences with 100,000 Genomes and includes Newcastle University, Sanger Institute Cambridge, University College London and Kings College London.

The aim is to establish a body of detailed and insightful evidence on the experiences of patients/participants and families in 100,000 Genomes, and to enable the participant voice to be heard regarding key areas of policy, practice and governance.

Register at:


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