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

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

OTHER RARE DISEASE NEWS

Find out what's new in the field of rare diseases Genetic Conditions: How Should Your DNA Be Used in the UK 100,000 Genomes Project? 6 November, London. Attendance is free Genetic Conditions: How Should Your DNA Be Used in the 100,000 Genomes Project? Progress Educational TrustOliver 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 sstarr@progress.org.uk 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 theSecretary 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. 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