• Installation based on University of Warwick research explores our genes and inherited conditions
• Features a 3m high, 6m wide sculpture based on the DNA double helix structure hung with genetic ‘baggage’
• Based on research conducted by Dr Felicity Boardman from Warwick Medical School with families living with inherited conditions
• Installation created by STAMP (Santé Theatre and Media Productions) with a sculpture built by Entify
• Will be unveiled at a private viewing on 1 November from 6.30pm-8pm before going on public display from 2 – 7 November
• Forms part of the University of Warwick’s programme for the ESRC Festival of Social Science: http://warwick.ac.uk/soc-sci-festival

Filming/photo opportunity: Media are invited to attend the private viewing of I:DNA at Coventry Cathedral, Priory Street, Coventry, CV1 5FB on Friday 1 November from 6.30pm-8pm, confirm your attendance at peter.thorley@warwick.ac.uk

The stories of families and individuals affected by genetically-inherited conditions are to be told in a new installation based of University of Warwick research that invites members of the public to explore their own ‘genetic baggage’.

The University and STAMP (Santé Theatre and Media Productions) have created the new touring art installation I:DNA, which is coming to Coventry Cathedral from 2 – 7 November 2019. Using the setting of an airport departure lounge, the centrepiece of the installation is a 3 metres high by 6 metres wide sculpture reminiscent of the DNA double helix and is accompanied by a looped film featuring real-life experiences of genetically-inherited conditions and a digital game.

This innovative project is created directly from research undertaken by Dr Felicity Boardman from the University of Warwick and funded by the Wellcome Trust. The team behind the installation are Dr Boardman (scientific lead), and STAMP - Santé Theatre and Media Productions (creative lead). The sculpture was built by Entify.

It will bring fresh perspectives to the lived experience of families and individuals affected by genetically-inherited conditions, and their reactions to genomic medicine. The installation is visiting Coventry Cathedral as part of the 2019 ESRC (Economic and Social Research Council) Social Science Festival. I:DNA will have a private view on Friday 1 November and then be open to the public at Coventry Cathedral from 2 – 7 November and is free to attend.

Statistics tell us that the average person is a carrier of at least one inherited genetic condition, yet many people are unaware of this, or the implications of genetic conditions for the health and wellbeing of affected families. Dr Felicity Boardman undertook extensive interviews with families affected by the most common inherited genetic conditions including Cystic Fibrosis, Spinal Muscular Atrophy, Fragile X Syndrome, Thalassemia and Haemophilia, as well as families affected by undiagnosed genetic conditions.

The team behind I:DNA worked together to produce a multi-faceted experience to express these perspectives, using a sung and spoken soundscape (drawn from verbatim text from interviews), filmed imagery and a large sculpture reminiscent of a DNA helix. The setting for the installation is analogous to an airport departure lounge, as audiences prepare for a journey of sorts – but in this instance their destination may not be all they had expected. They will progress through a security arch, past screens showing stories of real experiences, towards the sculpture, which evokes ‘unravelling DNA’ adorned with luggage to reflect our genetic inheritance. Audiences are encouraged to reflect on the experiences of others and share their own responses via social media, using the hashtag #IDNA

Dr Felicity Boardman (pictured right) from Warwick Medical School says: “This project brings science and arts together in an innovative and engaging way, encouraging us to reflect on the consequences of genomic medicine as it becomes part of NHS care.

“Through the use of audio soundscape and visuals, the project quite literally gives voice to people’s views and experiences of genomic medicine that might otherwise not be heard. Through the stories of others I:DNA invites us to reflect on ourselves and question how far we would be willing to delve into our own ‘genetic baggage’, whilst considering what this might mean for our future lives, identities, health, relationships, as well as the societies in which we live.”

Using over 1,500 detailed surveys and 160 in-depth interviews, Dr Boardman’s research explores the participants’ experiences of living with an inherited condition, and the way they view the possible eradication of genetic conditions from the human gene pool through the use of genetic screening programmes. The results of the study demonstrate the eclectic mix of voices from within this group of people, and their overwhelming ambivalence surrounding genomic technologies. Such views, Dr Boardman has argued, need to be incorporated within the social, ethical and policy responses to the expansion of genomic medicine, as well as the debates surrounding its future regulation, as genomic technologies start to enter NHS care.

Artist Esther Appleyard-Fox with BRiGHTBLaCK have created a complementary digital game from the same research – called iDNAKnowing. iDNAKnowing is an online interactive storytelling experience, which shares these real experiences and thoughts around genetic screening. These voices disrupt an otherwise sterile and orderly environment and put the player in the position of deciding how much they really want to know and what constitutes knowledge.

Esther says: "My arts practice encourages audiences to talk about difficult issues they might otherwise not feel comfortable discussing. In particular the ethical dilemmas of genetic screening.”

As well as the touring installation, a short documentary film reveals the fascinating approach to the process of making the work: https://youtu.be/373t3MlqWno

STAMP Artistic Director Claudette Bryanston says: “STAMP has a unique approach to each project and the process by which we arrived at the finished installation is a hugely important part of I:DNA. This collaboration between the creative arts and social science shines a light on how we all view health and encourages everyone to have a conversation about disability and life choices.”

This public exhibition of I:DNA is one of nine free workshops and events organised by the University of Warwick as part of the UK-wide ESRC Festival of Social Science, taking place from 2 – 9 November 2019.

Festival-goers can find out about how our understanding of DNA might shape the future of healthcare, share a refugee’s frightening journey across the Mediterranean by sea, dig deep into archive recordings of the Coventry accent, explore the impact of landmark legal cases through art, photography and theatre, or take a guided walk on Coventry’s wild side to explore the local environment.

The 17th annual Festival of Social Science takes place from 2-9 November 2019 with over 470 events nationwide.

Run by the Economic and Social Research Council, part of UK Research and Innovation, the festival provides an opportunity for the public to meet some of the country’s leading social scientists to discover, discuss and debate how research affects their lives.

With a range of creative and engaging events going on across the UK, there’s something for everyone including businesses, charities, schools and government agencies. The full programme is available at: esrc.ukri.org/festival.

I:DNA exhibition opening times:

Date	Opening Times
Saturday 2nd Nov	10:00-12:00
Sunday 3rd Nov	Closed
Monday 4th Nov	10:00-12:00 & 13:00-16:00
Tuesday 5th Nov	10:00-12:00 & 14:00-16:00
Wednesday 6th Nov	10:00-12:00 & 13:00-16:00
Thursday 7th Nov	10:00-12:00

Ends

Notes to editors:

Twitter:

@_I_DNA

@santetheatre

@ImaginingFuture

#IDNA

#ESRCFestival

More information:

www.warwick.ac.uk/IDNA

warwick.ac.uk/imagining_futures

www.stamproductions.co.uk

idnaknowing.com

esrc.ukri.org

Project Description

I:DNA Imagining Futures

This art installation embraces a multi-artform immersive event which is funded by the Wellcome Trust and is part of the ESRC (Economic and Social Research Council) Social Sciences Festival 2019. It explores the social and ethical impact of genomic medicine from the perspectives of those who have direct experience of a genetic condition, combining in-depth qualitative interviews with large-scale surveys. By drawing on the rich, expert knowledge of people living with Spinal Muscular Atrophy, Haemophilia, Thalassaemia, Fragile X Syndrome and Cystic Fibrosis, as well as genomic sequencing volunteers within the 100,000 Genomes Project, this study highlights the way in which ‘lived experience’ is as critical as information about medical symptoms to understanding how life with a genetic condition is actually experienced. The study illustrates that people living with genetic conditions have much to contribute to debates and decisions around how genomic technologies should be used, and which conditions they should target. Given the increasing power of genomic medicine to influence decisions about who should, or should not, be born, these debates, and the inclusion of the views of affected families and individuals, are now critical.

Feedback from I:DNA at the British Science Festival

“I never thought I would be so touched and impressed with an exhibition quite like this one. I am incredibly thankful for having seen it.”

“It’s so important to give a platform to those people who rarely get to be heard- and even better when it’s presented in such a creative way.”

“Honestly never thought it would be so powerful.”

“It has allowed me to look from a new perspective about something I had not fully thought about, but affects us all.”

29 October 2019

For interviews or further information contact:

Peter Thorley
Media Relations Manager (Warwick Medical School and Department of Physics)

Email: peter.thorley@warwick.ac.uk

Tel: +44 (0)24 761 50868

Mob: +44 (0) 7824 540863