Health Education England’s Genomics Education Programme (GEP) is now accepting applications for funded places on the Masters in Genomic Medicine course and individual modules of continuing professional and personal development (CPPD) for the coming 2016/17 academic year.
The Masters in Genomic Medicine and associated CPPD modules have been designed to support the introduction of personalised medicine into the NHS, the work of NHS Genomic Medicine Centres and the 100,000 Genomes project.
The full course and a number of individual modules are available through a national network of nine universities, with the Master’s offered as a one-year full-time or a two-year part-time study option. Open to all NHS healthcare professionals, the course aims to enhance knowledge and skills in this rapidly evolving field.
Over the next few months, Genomics England and the BSA will be working together to run a series of Future Debates in the summer, as well as publishing a social intelligence report in the late spring.
Genomics England want to showcase the potential benefits whole genome sequencing can offer patients, but also want to understand public concerns. The aim of the BSA’s Future Debates are to empower many more people – not just scientists – to constructively engage in debates over science’s role in their lives, their local economy, and the UK’s future.
Vivienne Parry, Genomics England’s Head of Engagement, said:
“It’s very important that debates about the future of genomics and the use of data in healthcare take place at a local level. So we are very excited to be working with the British Science Association and its great local networks on ‘Future Debates’. Having long been involved with the BSA, I know that through them, we’ll have a great series of lively debates.”
Imran Khan, Chief Executive of the British Science Association, said:
“I am delighted that Genomics England have decided to work with us on this new partnership on the 100,000 Genomes Project. At the British Science Association we strongly believe that more people should feel empowered to constructively engage in debates over science’s role in our lives, our society, and the UK’s economy.
“Genomics England’s work is vital to helping us adapt to and shape a future where our genes and genomes will have a bigger impact on our health and wellbeing. We hope that this series of debates in the summer will not only help the UK public feel more invested in genomics research but will also allow them to have a say on its direction.”
‘How easy is it to strike up a conversation about DNA and genomics? Geno-what?’
Image from one of the animations #glitch
This is a challenge faced by scientists and the general public ever since the first human genome was mapped fifteen years ago. A new project, Socialising the Genome, is now underway to find out how to make genomics a more social concept.
The last Wellcome Trust Monitor survey said only 12% of the population would say they had a good understanding of what a genome is.
With the UK leading the world’s largest genome sequencing project, the ‘100,000 Genomes Project,’ aimed at transforming how we are treated in the NHS, the science around genomics needs a conversation boost.
Image from one of the films #DNAZING
So, what sort of narratives, metaphors, mantras and memes – can we use to socialise an otherwise dense topic that even the specialists find difficult to navigate? Dr Anna Middleton, Genetic Counsellor and Social Scientist at the Wellcome Trust Sanger Institute says, ‘These are questions that I’ve been thinking about my whole career.’
‘Genetic information is not only important to individuals but also potentially to those nearest and dearest too – it really is a social concept’.
‘Socialising the Genome’ is an engagement project funded by Genomics England, the Wellcome Trust and the Wellcome Trust Sanger Institute. It is led by Dr Anna Middleton working with Julian Borra, Global Creative Strategist, and Founder of Thin Air Factory and ex Saatchi and Saatchi Group Creative Director.
Julian explains, ‘A chasm exists between the world of academia and the sciences and that of the everyday person in the street. There needs to be a process of acclimatisation when travelling between one and the other.’
Drawing from one of the animations #searchme
Vivienne Parry, Head of Engagement at Genomics England says, ‘If genomic medicine is set to become part of mainstream healthcare in the NHS then we know that every one of us will experience more of it in the treatment of ourselves or our families’
Anna Middleton says, ‘We don’t yet know how to make genomics an everyday conversation for people currently unconnected to it. We don’t know what messages about genomics are meaningful to the public.’
One of the animations #reasonstobecheerful
‘Socialising the Genome’ has done a series of focus groups with members of the public to explore what people already understand about DNA and genomics – even if they think they know nothing – and how they are currently talking about it. Insights from these have been given a creative makeover using skills employed in the advertising industry and turned into six animations.
The animations can be seen at www.genetube.org and the research team now need to know what the public think about them. Are the ideas in the animations likable? Do they resonate? But most importantly are they sharable and could they be used as a starter for a conversation?
One of the animations #Gnome
Dr Audrey Duncanson, from the Wellcome Trust, added: “There have been some remarkable advances in genome research in recent years, many of which are poised to transform patient care, through improved diagnosis and better treatments. In such a rapidly progressing field, it’s vital that we maintain and open dialogue between scientists and the public, so that as many people as possible can benefit from the advances in genomic medicine.”
Julian Rayner, Director of Scientific Courses, Conferences and Public Engagement at the Wellcome Genome Campus said, “Genomics is going to be an increasing part of both science and everyday life in the coming years. On the Wellcome Genome Campus we are committed to helping people understand the science and implications of genomics, and listening to their hopes and worries. Anna’s exciting work will help us start those essential and fascinating conversations.”
By Dr Anna Middleton, Principal Staff Scientist (social science, ethics, genetic counselling), Wellcome Genome Campus, Cambridge.
How easy is it to strike up a conversation about genomics? Geno-what?
Image from one of the animations #glitch
Does the average person on the street know enough about the issues to even care? A project called Socialising the Genome has just been launched to explore how to turn genomics from an anti-social concept to a more social one. Animations were created from focus group discussions to help understand how people talk about genomics, and what they understand. These animations are now on the newly launched website www.genetube.org
Image from the #gnome animation
It’s not just science of genomics that can seem impenetrable. Just the name itself can take people in all kinds of odd directions. [Several focus group participants assumed there to be a ‘mistake’ in pronunciation: sounding the silent ‘G’ in Gnome. This takes us off into all sorts of interesting tangents about the options for ‘Gnome testing’!]
The first time people might experience genomic technology is when being tested as part of routine healthcare and something genetic or inherited is picked up. Given that genomics is now becoming a mainstream source of data within most disciplines in medicine, it is likely that all of us will have some sort of genomic test at some point in our lives.
Some of us will care little for the science behind those tests – in much the same way many of us know little of the engine under the bonnet of our car. However, the impact of a genomic test result may be relevant, not only to you, but also your family (this makes it quite different from other sorts of medical tests that give individual health results). Such a test may also reveal information that is quite unexpected as many different medical conditions are tested in one go.
What hooks can be used to convey the concepts, make it personal, help it resonate?
Image from one of the animations #searchme
What sort of framings – narratives, metaphors, mantras and memes – can we use to socialise an otherwise dense topic that even the specialists find difficult to navigate? As a genetic counsellor, these are questions that I’ve been thinking about my whole career.
Reaching people with this, is a challenge; the science needs a conversation boost, it needs to feel meaningful, relevant and not least of all, it needs to be memorable so that the content can be relayed to relatives. After all, genetic information is not only important to individuals but also potentially those nearest and dearest too – it really is a social concept.
Image from one of the films #reasonstobecheerful
In the ‘Socialising the Genome project’ we are thinking carefully about what people already understand about genomics – even if they think they know nothing – and we have built on this to create a series of animations that can help to start a conversation about genomics with patients using the NHS.
The project is particularly exciting due to the novel partnership we have set up between social science (me) and the creative advertising world (Julian Borra Global Creative Strategist and Founder of Thin Air Factory and ex Saatchi and Saatchi Group Creative Director). Julian and I are using our collective skills to see if we can create a ‘populist, scalable conversation’. I provide the material; he provides the razzamatazz.
Image from an animation
I have done a series of Focus Groups to explore what various groups of ‘public’ understand and believe already about genes, DNA, genetics and genomics. The insights gained from these have been given a creative makeover and turned into 6 animations. These animations will be evaluated via a set of questions to assess likeability, interest and whether the concepts inspire people to want to share them in some way.
The reason I feel particularly excited to be working directly with Julian is that he has a strong track record of delivering advertising messages that reach millions of people (know of the Churchill Insurance nodding dog? How about Richard Branson’s #VOOMPitch to Rich? Both of these are Julian’s handiwork).
We don’t yet know what messages about genomics resonate with people nor what information they feel they need to know and this is what Julian and I have been puzzling over in considerable detail for the last year. We have created a new partnership that aims to combine our collective skills. Together we plan to discover new messages to deliver information about genomics – messages that connect people to the science, messages that they want to share, and messages that help them when discovering genomics for the first time in the NHS.
Image from an animation
In that way we hope to rub some of the more anti-social corners off the deeper science conversations – and bring them to the dinner, café, chippy and brasserie table, so we can all benefit from having them and sharing them.
The animations can be found at www.genetube.org. Have a look, see what you think, leave us your views. We need to know if they are any good or not; and if not, then that’s useful to know too. We need to find out how to make genomics an everday conversation for people currently unconnected to it and this is just a first step at finding out how to do this.
Dr Richard Scott, Consultant in Clinical Genetics at Great Ormond Street Hospital and an Honorary Senior Lecturer in the Clinical and Molecular Genetics Unit at the Institute of Child Health, wrote a piece for the Huffington Post blog yesterday for Rare Disease Day.
Scottish Genomes Partnership backed by £6 million.
Minister for Sport, Health Improvement and Mental Health, Jamie Hepburn has announced a £6 million investment in the Scottish Genomes Partnership (SGP), ahead of a parliamentary reception to mark Rare Disease Day.
The SGP is a collaboration of Scottish Universities and the NHS capitalising on £15 million investment in whole genome sequencing technology by the Universities of Edinburgh and Glasgow. The Scottish Government is contributing £4 million and the Medical Research Council, £2 million.
By combining knowledge of the whole genome sequence – or the entire genetic code – of patients and information from their health records, genetic diseases can be understood better and new ways to test, manage and treat these diseases devised.
SGP will be using this technology for genomic research on rare diseases, cancers and Scottish populations, and to work with Genomics England on the diagnosis of patients in Scotland with rare genetic diseases.
Mr Hepburn said:
“This is a really exciting announcement. Through our investment in the Scottish Genomes Partnership and the collaboration with the Medical Research Council and Genomics England, NHS Scotland may be able to offer more rapid diagnosis to rare disease patients or a diagnosis where one hasn’t been possible before, improving the lives of patients with these conditions.
“Allied to our investment in SGP’s genomic research programmes, the new knowledge gained can improve our understanding and help the development of new tests, drugs and treatment strategies for rare diseases and cancers to benefit patients. This investment in cutting edge science can also create new opportunities for research and the life sciences sector, and enhance Scotland’s reputation for clinical research and innovation.”
Chief Scientist at Genomics England, Professor Mark Caulfield said:
“I am delighted that Scotland is joining the 100,000 Genomes Project. This will bring new diagnoses for patients with rare disease and extends the benefits further across the UK.”
Professor Tim Aitman, Co-Chair of the Scottish Genome Partnership and Director of the University of Edinburgh’s Centre for Genomic and Experimental Medicine said:
“This funding creates a unique opportunity to translate the investment of Scottish Universities into immediate healthcare benefits for Scottish patients. The remarkable advances in genome technology over the past five years will now be available to patients in the Scottish NHS, bringing a new dimension of healthcare to Scottish patients with cancer and inherited diseases. We look forward to working with our partners in the Scottish NHS, the Scottish Universities and Genomics England on this landmark project.”
Professor Anna Dominiczak, Vice-Principal and Head of the University of Glasgow’s College of Medical, Veterinary and Life Sciences said:
“We are very pleased and proud to be a partner in the Scottish Genomes Partnership, and welcome this further investment into the future of precision medicine in Scotland.
“The SGP will play a significant role within the recently-established Scottish Ecosystem for Precision Medicine, which will co-ordinate clinical, laboratory and informatics resources and opportunities across Scotland.
“Through collaborations like the SGP, and a partnership with Precision Medicine Catapult to lead the National Centre of Excellence, Scotland will be at the forefront of developing cutting-edge precision medicine technologies, with the aim to deliver the right drug for the right patient at the right time.
“We’re extremely proud to playing a leading role in the SGP, and the wider Scottish Precision Medicine Ecosystem.”
Dr Nathan Richardson, Head of Molecular & Cellular Medicine at the Medical Research Council:
“We are extremely pleased to be jointly investing with the Scottish Government to help support their ambitions in genomic medicine. This is part of a broader MRC ambition to enhance investment in genome research across the UK and complement our major investment in Genomics England.
“Recent technological advances in genome sequencing alongside developments in assimilating and interrogating vast and complex data sets offers exciting opportunities to better understand disease and improve precision healthcare. It is quite apt that this announcement comes on Rare Disease Day as this new funding embodies our continuing commitment to investigate the root cause human diseases and improve human health.”
Professor Zosia Miedzybrodzka, Professor of Medical Genetics University of Aberdeen and NHS Grampian, Chair of Scottish Clinical Genetics Forum said:
“NHS Scotland genetics professionals are delighted that Scottish patients with rare diseases will have the opportunity to benefit from state of the art technology to help to determine the underlying genetic cause of their condition. This will directly help their medical care and that of their families, and will build a knowledge base that will benefit us all.”
Rebecca McEleney from Moray, whose six-year-old son Corey has severe autism, seizures and developmental delay said:
“I have fought for years to understand Corey’s disabilities. This project gives us as a family the opportunity to find out the cause of his needs to aid him and future generations.”
The Scottish Genomes Partnership was founded following a £15m investment by the Universities of Edinburgh and Glasgow in January 2015. This initial funding enabled the Universities to partner with Illumina for the purchase of state-of-the-art equipment for sequencing human genomes. The equipment enables researchers and clinicians in Scotland to study the genomes of both healthy and sick people on a large scale and faster than before.
SGP will start March 1 2016 and is aiming to enrol the first patients from NHS Scotland during summer 2016.