Gene:Bot is a public engagement project in partnership with:
To engage with over 1m people across the south of England to increase discussion and understanding of inheritance and genomics, and an increased awareness that difference and diversity are natural and normal.
- Create a large, inspiring and fun exhibition at Winchester Science Centre - Gene:Bot
- Create and tour a mobile exhibit to extend the reach of the project and engage in person with a more diverse audience
- Provide interactive online resources and content to enhance people’s understanding of genomics and encourage users to share their content amongst their peers online.
Why is this needed?
One in 17 people has a rare genetic condition. Most of us at some point will engage with someone with a genetic condition. Most of us will experience genomically-informed healthcare. And every one of us needs to know why we are who we are, how we are similar, and how we are diverse.
- One in 17 people, or 6% of the population, will be affected by a rare disease at some point in their lives.
- This equates to approximately 3.5 million people in the UK.
- 80% of rare diseases have a genetic component.
- 75% of rare diseases affect children. (http://www.raredisease.org.uk).
Gene:Bots, like humans, are translated from a code, and like humans, sometimes have errors in this code. They offer an unthreatening allegory of genetic disease, and an opportunity to get genetics out of gene clinics, into community and conversations.
Gene:Bot offers an opportunity to explore genetics in a safe, unacademic, demedicalised space. The exhibit will be a major addition to WSC with a distinct ‘wow’ factor for the centre and its users. Based on current WSC footfall, Gene:Bot will be directly accessed by over one million visitors in a guaranteed five-year lifetime, including 230,000 schoolchildren, and 60,000 with a genetic condition.
Engagement of children offers an opportunity for horizontal discussions in class settings, and intergenerational communication within families. Live science shows in school holidays are already part of the WSC programme, and will enable targeting of genomic information. Notably, we aim to liaison with local NHS services to offer family days for families referred to genetics, with free entry and expert support, to make space for life-altering conditions.
Genetics and genomics are permeating every sphere of healthcare, reaching more patients than ever before, from rare disease to cancer to precision medicine. But genomic science and technology have outstripped the understanding and trust of the public. There is an unmet need to communicate genomics, from health professionals at all levels, to educators, patients, and the public, enabling them to understand, access and trust the complexity and potential of genomically-informed healthcare.
This unmet need prompted the Gene:Bot project. It has been developed by a partnership of doctors, patient representatives, researchers, industry partners and science communicators, and will be developed in collaboration with focus groups including teachers, children, and families affected by genetic conditions.
Who is it for?
This project will raise awareness of genomics and why it is crucial to detecting, diagnosing and treating rare diseases. At the highest level this information is valuable to everyone. By positioning the main exhibition at Winchester Science Centre and Planetarium the project will target the 175,000 annual visitors the centre receives, including 40,000 school children. The design of the exhibition will include a ‘take home’ element, a Gene:Bot, which will encourage further conversation and learning at home and extend the reach to visitors’ friends and families.
The exhibition will provide a valuable teaching resource for education, science and medical professionals and the families affected by genetic diseases, away from a clinical environment. The mobile exhibit will increase our ability to target and engage directly with these audiences.
What are we looking to do?
Gene:Bot provides a large, interactive and hands-on look at ‘what makes you, you?’
Select the building blocks for life from an actual gene pool, and use them to code your very own unique take home Augmented Reality Robot – a Gene:Bot. This creative and fun new exhibition for Winchester Science Centre features multiple robot building stations where children and their adults will be able to explore their robots’ genetic make-up.
Collect the blocks imprinted with the characteristics of your choice from the gene pool and slot them into the Gene:Bot creation station. Your Gene:Bot’s code is created from two “parent” robots that you code and, like in Humans, the code is selected and your creation complete. Once your code is ready, you will see your own augmented reality Gene:Bot constructed in front of you.
Once your robot is made, take your Gene:Bot home and via your smartphone or tablet and using the technology of augmented reality your very own Gene:Bot will come alive and tell you about its code and more about the science that makes us, us. Experiment again and again and explore how coding your Gene:Bot affects the look and behaviour of your robot.
Find out more about DNA, where our characteristics come from, rare diseases and learn about the world changing research being conducted into Genomics.
The Gene:Bot exhibit is a visually striking and impactful exhibition looking at inheritance, genomics rare disease and the latest research. The exhibit is a 6mx6m dome structure with 4 Gene:Bot creation stations allowing for multiple interaction points and information stations. The exhibition will be used as a tool for raising awareness of the 100k Genomes project and used as a resource for families to learn about the breakthroughs in personalised medicine.
ROVING Gene:Bot . Visit the mobile Gene:Bot station on tour throughout the South of England and build your Gene:Bot online at genebot.co.uk
ROVING Gene:Bot is a portable version of the creation station for use in clinical environments, Open Days, roadshows, Science Festivals and public spaces.
What are we looking for?
We are looking to raise £100,000 to build, maintain and promote this project.
Who are we?
Key team members:
Ben Ward - Chief Executive - Winchester Science Centre
Ben is the Chief Executive of Winchester Science Centre and a passionate Science Communicator. Ben and his very experienced team will lead on the delivery of the project and be responsible for the ongoing support through the whole project.
Winchester Science Centre is a leading hands-on science centre who specialise in making interactive, fun and engaging educational exhibits. As experienced science communicators Winchester Science Centre have a background in making engaging and durable exhibits with partner organisations.
Ben has been at Winchester Science Centre since 2013 and was previously at Hampshire County Council. Ben has two science mad children and reluctantly spends his weekends off at Winchester Science Centre with his family.
Frank Ratcliff - Senior Programme Manager, Wealth and Enterprise - Wessex AHSN
After a PhD in the genetics at the Sainsbury laboratory, Frank quickly moved into commercial research, first developing, patenting and licensing a tool for functional genomics, and then moving to run a series of crop improvement projects at Syngenta. This work relied heavily on bioinformatics, and after 3 years Frank moved to the scientific computing team to support a range of projects across Europe and the US.
In 2003 Frank moved to Pfizer, and then to Boehringer-Ingelheim in 2007 where he worked on a variety of partnership projects with various NHS organisations. In this capacity he joined Wessex AHSN on secondment 2 days per week in 2013 to support their respiratory programme; a move which turned full-time in 2015 when Frank joined the commercial team of Wessex AHSN. His commercial experience spans all stages from lab research to major global products, supplemented with PRINCE2 and a CIM diploma in marketing.
Frank is married with two children and spends most of his spare time outside, either running, cycling, gardening or fishing.
Dr Catherine Mercer - Clinical Geneticist - University Hospital Southampton
Catherine joined the University Hospital Southampton as a consultant in 2013 and is the lead clinician for the delivery of cardiac genetics services across the Wessex region. She is involved in further development of the cardiac genetics service, to increase clinical capacity and ensure equity of patient access regionally.
Dr Mercer also specialises in the genetic diagnosis of individuals with congenital malformations or learning difficulties, and in the clinical interpretation and significance of genetic test results.
Professor Deborah Mackay MA, PhD - Professor of Medical Epigenetics - University of Southampton
Deborah Mackay is Professor of Medical Epigenetics within Medicine at the University of Southampton. She is the laboratory lead of the Wessex Imprinting Group, investigating the molecular basis of human imprinting disorders, and translating their research findings into clinical benefit.
Deborah studied Biochemistry at the University of Oxford, took her PhD in cell biology at ICRF, and began her postdoctoral work as a molecular cell biologist at UCL before developing her current interests in human medical genetics and epigenetics.
Professor Karen Temple MD, FRCP, MBChB - Director - Wessex NHS Genomic Medicine Centre
Karen is an experienced clinical geneticist, and has been a consultant at University Hospital Southampton since 1990. Karen plays a major role in developing the Wessex Clinical Genetics Service, is an international speaker on dysmorphology, one of the chairs of the national dysmorphology group, and has led on the IT development for UK clinical genetics services. In 2006 Karen was appointed professor of medical genetics in the Faculty of Medicine, University of Southampton, but maintains an honorary consultant contract with UHS. Karen is deputy director of the academic unit of human development and health, and past director of the human genetics division.
Mariana Campos, PhD - Public Engagement Manager - Genetic Alliance
As Public Engagement Manager, Mariana is responsible for ensuring that Genetic Alliance engage effectively with existing and new member organisations, as well as new audiences. Mariana’s work involves developing high-quality information resources for patients and families. Mariana is also responsible for coordinating the delivery of project work, for example, establishing peer support networks or patient groups for rare and genetic conditions and exploring patient attitudes to genome sequencing.