Genetic Conditions: How Should Your DNA Be Used in the 100,000 Genomes Project?

Progress Educational Trust
Oliver Thompson Lecture Theatre, Tait Building, City University London, Northampton Square, London EC1V 0HB
6 November 2014
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 an article about the themes of the event by speaker Dr Sarah Wynn, and a synopsis of the event proceedings by Dr Nicoletta Charolidi, in PET's flagship publication BioNews.
Films of events in the Genomics Conversation programme can be watched here, here and here.

The next three free-to-attend events in the Genomics Conversation programme will be:
'How Do We Make Genomics Everybody's Business?', in Manchester on the evening of Wednesday 5 September 2018.
'Whose Genome Is It Anyway? Big Data and Your DNA', in Edinburgh on the evening of Wednesday 10 October 2018.
'What Is the Value of Our Genomes - to Us, to Our Families, to the Future of Medicine?', in Cardiff on the evening of Thursday 15 November.
To book places at any of these events, please email sstarr@progress.org.uk
If tweeting about any of these events, please use the hashtag #PETgenomic

The 100,000 Genomes Project being undertaken by Genomics England - a company established by the Government, with the Secretary of State for Health as sole shareholder - aims to sequence 100,000 whole genomes from NHS patients and their families. Over the course of the project, Genomics England will accrue entire genomic sequences of around 75,000 people, and will effectively own this data. So what is the company going to do with it?
Genomics England is upfront about the fact that it does not have the resources to undertake research using its data. The company will therefore sell both public and private licences, to researchers who wish to use the data for health purposes. Access will be granted after research proposals are approved under strict conditions being developed by the company's Ethics Advisory Committee, and after the researchers undergo an identity check. Genomics England has reassured participants that nobody will be permitted to access their data for insurance or marketing purposes.
Participants must consent to commercial companies being able to access their data in anonymised or 'deidentified' form. The only circumstances in which data can be legitimately 'reidentified' are when findings are fed back to participants by clinicians, or if an application for identifiable data is made via legislation which provides for emergency medical situations. But despite every precaution being taken, there can never be a cast-iron guarantee that a participant's identity will not be revealed. The very scale of the 100,000 Genomes Project will inevitably attract some questions and concerns about data security.
This event will tackle these questions and concerns head-on, and will address the commercial aspects of Genomics England's mission and partnerships. It will give you an opportunity to put questions and comments to those involved in the project, and to hear a range of contrasting views on the ethical and practical issues raised.

Speakers:
Mark Caulfield
Professor of Clinical Pharmacology at Barts and The London School of Medicine and Dentistry, and Chief Scientist at Genomics England
Tim Hubbard
Professor of Bioinformatics and Head of Medical and Molecular Genetics at King's College London's Faculty of Life Sciences and Medicine, and Head of Bioinformatics at Genomics England
Dr Mark Sheehan
Research Fellow at the University of Oxford's Ethox Centre and Institute for Science and Ethics, and at the National Institute for Health Research's Oxford Biomedical Research Centre
Dr Sarah Wynn
Information Officer at Unique, the Rare Chromosome Disorder Support Group

Chair:
Dr Christine Patch
Trustee at PET, and Consultant Genetic Counsellor and Manager at Guy's and St Thomas' NHS Foundation Trust

Partners and supporters:
Genomics England