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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
06 November 2014 6.30pm-8.30pm
An evening event organised by the Progress Educational Trust (PET) in partnership with Genomics England and City University London's Science Journalism course, chaired by Dr Christine Patch, with speakers Professor Mark Caulfield, Professor Tim Hubbard, Dr Mark Sheehan and Dr Sarah Wynn.
This event is free to attend, but advance booking is required - please email Sandy Starr at and he will add you to the attendee list.
If tweeting about this event, please use the hashtag #100KGP. You can join the event's Facebook page here.
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 by 2017. 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.

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

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

Datalabel The UK's Leading Supplier Of Medical Labels & Asset Labels

Genome Editing, 14 Days and Beyond

Public Conference
7 December 2016

Speakers include

Professor Magdalena Zernicka-Goetz

Dr Kathy Niakan

Professor Sir Ian Wilmut

Lord George Carey

Baroness Mary Warnock

Dr Simon Fishel

Professor Bruce Whitelaw

Professor Alison Murdoch

Professor David Jones

Professor Sarah Franklin

Professor Stephen Wilkinson


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