Whose Genome Is It Anyway? Big Data and Your DNA

Progress Educational Trust
Royal Society of Edinburgh, 22-26 George Street, Edinburgh EH2 2PQ
10 October 2018 5.45pm (tea/coffee), 6.30pm-8.30pm (panel discussion)
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, and was held at the Royal Society of Edinburgh.
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.

Over the past five years, the 100,000 Genomes Project launched by the UK Government has been working to sequence and study 100,000 whole genomes from consenting NHS cancer patients, rare disease patients and their families.
This work is being carried out across the whole of the UK - by 13 Genomic Medicine Centres established by NHS England, by a Scottish Genomes Partnership which brings four Scottish universities together with NHS Scotland and four of its regional boards, and by additional Genomic Medicine Centres in Wales and Northern Ireland. The work is helping to diagnose and treat participating patients, while also informing scientific knowledge as a whole and informing the development of new tests and treatments.
Building on this work, the UK Government has now launched a new NHS Genomic Medicine Service - the world's first national genomic healthcare service - through which patients with certain cancers and rare diseases, plus seriously ill children in general, will be offered whole genome sequencing.
This will expand upon the 100,000 Genomes Project, and upon other projects including UK Biobank - which for more than a decade has been studying biological samples from half a million participants - so that one million whole genomes will be sequenced by these projects over the next five years. This is part of a wider Government ambition, to see five million genomes in total sequenced in the UK during the next five years.
Meanwhile, in addition to its work on the 100,000 Genomes Project, the Scottish Genomes Partnership also has its own research programmes in cancer and rare disease. Furthermore, it is sequencing the genomes of people in Shetland who are participating in the Viking Population Study, which in turn is part of a research programme that also involves participants in Croatia.
This event explored questions including:
How are clinical and research uses of genomic data related to and distinguished from one another, in the 100,000 Genomes Project and the Scottish Genomes Partnership? How will these uses be related and distinguished in future, within the NHS Genomic Medicine Service? What forms of consent, to these uses of data, are required from patients and participants?
How - if at all - do the provision of genomic medicine, and the clinical and research uses of genomic data, differ between Scotland, England, Wales and Northern Ireland? How might this change in future? And what issues are raised by international uses of UK genomic data? (For example, the UK is one of 13 European countries that signed a declaration this year, committing to enable cross-border access to genomic data.)
To whom does genomic data belong, if indeed it can be said to belong to anyone? To the individual patient? To the patient's blood relatives, who share part of their genome (or in the case of identical twins, share all of their genome)? To the NHS, or one of its constituent bodies? To the Government as a whole? To the researchers - in the public and private sectors, nationally and internationally - who make use of the data? To some combination of these different parties? Or to none of them?

Speakers:
Zosia Miedzybrodzka
Professor of Medical Genetics and Co-Director of the Centre for Genome-Enabled Biology and Medicine at the University of Aberdeen, and Chief Investigator and Clinical Lead for the 100,000 Genomes Project at NHS Grampian
Dr Austin Diamond
Quality Manager at NHS Lothian's Molecular Genetics Service, and Collaborator in the Locus Reference Genomic project
Natalie Frankish
Policy and Engagement Manager (Scotland) at Genetic Alliance UK and Rare Disease UK
Phil Booth
Coordinator of medConfidential
Dr Sarah Chan
Principal Investigator in the Centre for Biomedicine, Self and Society at the University of Edinburgh's Usher Institute of Population Health Sciences and Informatics

Chair:
Professor John Mattick
Chief Executive of Genomics England, and Research Fellow at the University of Oxford's Green Templeton College

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