How Do We Make Genomics Everybody's Business?

Progress Educational Trust
Trafford Suite, Midland Hotel, 16 Peter Street, Manchester M60 2DS
5 September 2018 6.30pm-8.30pm
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.

This year will see the completion of the 100,000 Genomes Project established by the UK Government, and the launch of a new national NHS Genomic Medicine Service. These endeavours are part of an ongoing effort to incorporate genomics and genomic data into mainstream UK healthcare.
The Chief Medical Officer, Professor Dame Sally Davies, argues in her report Generation Genome that 'key to advancing genomic medicine will be helping patients to understand that by agreeing to use of data about their illness, they bring direct benefits to themselves'.
Professor Davies goes on to say: 'We need to continue and strengthen an open dialogue and make sure that the argument for joining in is heard. To achieve this we need to maintain patients' and the public's trust and make genomics everyone's business.'
A similar conclusion is reached by the UK politicians who conducted a recent inquiry into genomics in the NHS, saying: 'It is encouraging that a high proportion of patients involved in the 100,000 Genomes Project consented to sharing their genomic data, but the "broad consent" process used in the Project is unlikely to be feasible for routine genomic medicine in the NHS without an extensive and continuing public debate to raise public understanding and acceptance.'
In its response to this inquiry, the UK Government observes that 'a core objective of the 100,000 Genomes Project is to address aspirations and concerns about genomics in dialogue with participants and the wider public'.
At this public event, leading figures in genomic medicine and genomic research explored questions including:
In what sense should genomics be 'everyone's business'? How can people be assured that their genomic data is being handled securely and responsibly, and that it cannot or will not be used to identify them?
How many patients stand to benefit from genomic medicine, and in relation to what conditions? Which cancers and rare diseases are being addressed by the 100,000 Genomes Project and the NHS Genomic Medicine Service? What other conditions could benefit from genomic medicine in future?
The word 'business' has several meanings, one of which is commerce, and genomics - including NHS genomics - is a key focus of the UK's current Industrial Strategy and Life Sciences Sector Deal. How do the public and private sectors work together on UK genomics? How can this relationship be clearly conveyed to and discussed with the public?
How can we best 'maintain patients' and the public's trust and make genomics everyone's business'? What are the benefits of doing so? What are the costs if we do not?

Speakers:
Professor Dame Sue Hill
Chief Scientific Officer at NHS England, and Senior Responsible Officer for the NHS Genomics Programme
Nalin Thakkar
Professor of Molecular Pathology and Genetics and Associate Vice President for Risk, Compliance and Research Integrity at the University of Manchester, and Consultant Histopathologist at Manchester Royal Infirmary
Paul Matthews
Head of Strategic Partnerships at Global Gene Corp
Vivienne Parry
Head of Engagement at UK Research and Innovation's Board

Chair:
Professor John Mattick
Chief Executive of University of Oxford's Green Templeton College

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