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 to increase awareness that difference and diversity are natural and normal.
- Create a large, inspiring and engaging exhibition at Winchester Science Centre, titled Gene:Bot.
- Create and tour a mobile exhibit to extend the reach of the project to a wider audience, with support of experts who will provide direct conversation with the public.
- Provide interactive online resources and content to enhance understanding of genomics and encourage the sharing of online information.
Why is this needed?
One in 17 people has a rare genetic condition. Most of us at some point will engage with someone with such a genetic condition. Most of us will experience genomically-informed healthcare in the future. We all have a fascination to know why we are who we are, how we are similar, and how we are different.
- One in 17 people, 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).
Our aim is to use virtual robots (Gene:Bots) as models of how inheritance works. The Gene:Bots, like humans, will be translated from a code, which can sometimes include errors. These models will offer an unthreatening allegory of genetic disease, and an opportunity to get genetics out of gene clinics, into the community and conversations. Gene:Bots allow genetics to be explored in a safe, un-academic, de-medicalised space.
The Gene:Bots virtual world will be a major addition to WSC and deliver a distinct ‘wow’ factor for the centre and its users. Based on current WSC footfall, the Gene:Bot exhibit will be directly accessed by over one million visitors in a guaranteed five-year lifetime, including 230,000 schoolchildren, and 60,000 people with a rare genetic condition.
WSC runs popular live science shows in school holidays, providing a ready-made forum for further discussion of genomics topics. The exhibit and such additional activities will provide a starting point for family discussions, and offer an appropriate way for teachers to introduce topics into classrooms.
NHS services will be contacted with an offer to host family days for families referred to genetics, with free entry and expert support (provided by the NHS), to create an informal and relaxed space for discussion of life-altering conditions and to allow families to create supportive relationships.
Genetics and genomics are thriving areas of science and technology and are becoming ever more important to healthcare for example by enabling the understanding of rare diseases, the risk of cancer and the personalisation of treatment.. However, the very speed of this advance has created a huge challenge in communicating current science and technology to the public. It is important that the public should understand and contribute to the ongoing developments in this area, especially where these developments impact their health, or the health of their loved ones.
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 genetics/genomics and why such information 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 WSC 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 virtual Gene:Bot, for display on the visitor’s own smartphone/tablet, encouraging further conversation and learning at home and extending the project’s reach to visitors’ friends and families.
The exhibition will provide a valuable teaching resource for educational groups, 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 modern, interactive and hands-on look at ‘what makes you, you?’
A Gene:Bot is a virtual robotic creature with physical and/or behavioural characteristics defined by coded blocks (each block representing a gene). This engaging and inspiring exhibition for children and adults features multiple robot-creation stations where visitors can design and construct their own Gene:Bots to explore how genes affect such characteristics, and how genes are inherited.
A variety of blocks are offered to the visitor. The visitor chooses blocks from the ‘gene pools of two ‘parents’ to design the robot genome with desired characteristics. Then, in the same way that we receive our genes from our human parents, the exhibit combines the genes from each Gene:Bot "parent" to create a new ‘child’ Gene:Bot with its own combination of characteristics, sometimes including errors in its code. This new creation is then brought "alive" through augmented reality technology. The resulting Gene:Bot is displayed in the exhibition, but can also be taken home for display via a smartphone or tablet, to show to others, allow continuation of discussion and thought at home, and encourage use of the Gene:Bot website with its additional learning resources.
This exploratory exhibition offers the visitor the opportunity to create their own design and breeding experiments, explore genetic disease, and investigate the subject matter in the way they find most personally engaging and at a level that suits their ability.
Where scientists are able to attend the exhibition, additional levels of engagement can be achieved through extended discussion of concepts, by relating the learning from the exhibition to current medicine and research, and by offering the visitor the opportunity to bring in their personal experience to the discussion.
Through fun and engaging play leading to thoughtful exploration, visitors will be able to learn about DNA, where our characteristics come from, rare diseases and also 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 up to date research. The exhibit is a 6mx6m dome structure with 4 Gene:Bot creation stations and additional information stations, allowing for multiple interaction points. 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.