Genomic Medicine Needs You - Do You Need Genomic Medicine?

Progress Educational Trust
East School, Examination Schools, University of Oxford, 75-81 High Street, Oxford OX1 4BG
16 October 2014 6.30pm-8pm
This public event was organised by the Progress Educational Trust (PET) in partnership with Genomics England, the organisation established by the UK Government to deliver the 100,000 Genomes Project.
The event formed part of the Genomics Conversation, a programme of activities led by Genomics England which involves the public and stakeholders in discussions about key issues in genomic medicine.
You can read a synopsis of the event proceedings, by Dr Kimberley Bryon-Dodd, in PET's flagship publication BioNews.
Films of events in the Genomics Conversation programme can be watched here, here and here.

The 100,000 Genomes Project aims to sequence 100,000 whole genomes from around 75,000 participants. The project is recruiting NHS patients with common cancers, plus NHS patients with rare diseases and their families. Participation is voluntary, with participants giving informed consent for their whole genomes to be sequenced.
Sir John Chisholm - Chair of Genomics England, the company established by the Government to carry out the project - says that 'participating patients will have the opportunity to benefit from clinical insights derived from the sequencing of their genome'. But what are these benefits and insights?
Participants will receive feedback from their clinician about their genome sequence, but it is by no means guaranteed that they will receive improved care. Many participants will not receive a diagnosis, but taking part in this project may provide their only hope. With UK Prime Minister David Cameron saying 'I believe we will be able to transform how devastating diseases are diagnosed and treated in the NHS and across the world', is there a danger that people will have unrealistic expectations? Could this create an unethical inducement to take part?
The 100,000 Genomes Project is both a research project and a healthcare initiative. This gives the project unprecedented scope to link genetic data with treatment outcomes, but also poses a number of challenges. One such challenge is how best to deal with incidental findings - genomic discoveries with implications for the participant's health, that are not pertinent to the condition that led to participation in the first place. Who should decide what is fed back to the participant?
This event explored what the 100,000 Genomes Project has to offer patients, and what patients have to offer the 100,000 Genomes Project.

Speakers:
Sir John Chisholm
Chair of Genomics England
Michael Parker
Professor of Bioethics and Director of the Ethox Centre at the University of Oxford's Nuffield Department of Population Health, and Chair of Genomics England's Ethics Advisory Committee
Richard Stephens
Cancer patient, Chair of the National Institute for Health Research/National Cancer Research Institute's Consumer Liaison Group, and Independent Public Member of Genomics England's Ethics Advisory Committee
Dr Simon Woods
Codirector of Newcastle University's Policy, Ethics and Life Sciences Research Centre

Chair:
Vivienne Parry
Science writer and broadcaster, and Head of Engagement at Genomics England

Partners and supporters:
Genomics England