I:DNA – an immersive exploration into the view of people living with genetic conditions

Date: 30 November 2020

I:DNA became the creative vehicle to reach new audiences with the profound stories taken from the Imagine Futures study.

This multi-sensory art installation moves online

In 2019, the Imagining Futures research by Prof Felicity Boardman, a professor in medicine ethics and society from Warwick Medical School and affiliate social scientist with the Wellcome Genome Campus Society and Ethics Research team, was conceived into a multi-sensory art installation.

Imagining Future began as a research project delving into the lived-experiences of people with a range of inherited conditions, and how their experiences informed their attitudes towards genomic medicine.

In the last few years, advances in genomic medicine have led to the development of innovative technologies that have the potential power to eradicate certain genetic conditions. As a result of these innovations, genetic testing and genomic medicine are becoming more widely discussed at the population level, with strategies being developed to implement these disciplines within NHS clinical practice.

This is being accelerated by the launch of the National Genomics Healthcare Strategy [GENOME UK: The Future of Healthcare], which aims to apply genomic advances to “drive improvements in diagnosis and personalised medicine; disease prevention; and research”Philippa Brice (Public Health Genomics Unit, University of Cambridge).

But is prevention ethical? And who is best-placed to answer that complex question?

Many policymakers would argue that prevention is the best way forward; that by enabling people to make reproductive decisions based on evidence from genetic screening, you can significantly reduce certain conditions within society. But much of this thinking is based on attitudes of people who don’t live with these conditions.

Imagining Futures sought to ask those living with the inherited conditions most likely to be the targets of screening (given their prevalence), their views on genomic medicine, to build an informed lived-perspective on the ethical issues that reside behind the health innovation.

The research focused on families affected by inherited conditions, for which genetic screening is, or could be, offered within healthcare services: Cystic Fibrosis, Spinal Muscular Atrophy, Fragile X Syndrome, Thalassemia and Haemophilia, as well as people living with undiagnosed genetic diseases. Collectively, they contributed to a myriad of personal experiences, voices, opinions, and insights.

This rich examination brought real-life experiences to the fore, and highlighted the need to connect these compelling stories with policymakers, as well as the wider public – for whom genomics is about to become very relevant through healthcare. After all, it is the people with lived experience who can offer us the most accurate insights into what life is really like with these conditions.

It’s likely that every person in society is a potential carrier of at least 4-6 genetic conditions, and with genetic screening about to become intrinsic in healthcare, diagnostic or therapeutic decision-making, it’s becoming ever-more important that people are aware of genomics, genomic medicine, and the impact of inherited conditions on families.

Did you know?

1 in 25 of us is a carrier of Cystic Fibrosis and 1 in 40 of us a carrier of Spinal Muscular Atrophy!

Most people have never (will never) encounter the types of inherited conditions researched by Felicity, despite them being among the most common inherited conditions in the UK, which is why the next phase of the project has been so important.

What is i:DNA?

I:DNA became the creative vehicle to reach new audiences with the profound stories taken from the Imagine Futures study.

In collaboration with artists from Santé Theatre and Media Productions CIC (STAMP), Felicity was able to showcase these emotive, personal experiences through an accessible and thought-provoking art installation, which has travelled from Oxford, Coventry, the British Science Festival and Millennium Point, Birmingham. The aim of which was to contextualise the role of genomic medicine within healthcare, and therefore in the future of our society, as well as to bring these previously unheard stories to audiences who may otherwise never encounter them.

This was visualised using a large aluminium structure, in shape of a denaturing Helix, placed in an airport style environment that encouraged people to take a journey through the lives of those living with inherited conditions.

i:DNA was visualised using a large aluminium structure, in shape of a denaturing Helix

Whilst the concept of the Helix preserved the scientific angle to appeal to healthcare professionals, the surrounding storytelling environment was designed to reach public audiences in an engaging, thought-provoking and understandable way.

The many coloured bags suspended from the Helix metaphorically represented both nucleotides on DNA and the concept of ‘genetic baggage’ – again reaching out to different audiences in very specific ways, whilst providing a visceral link.

Coloured bags were used to denote ‘genetic baggage’

The installation portrayed filmed portraits of the interviewees, as well as their words taken from excerpts from the interviews (spoken and sung by actors and choirs) – creating an evocative soundscape, all contributing to an immersive sensory experience. The poignancy of the words compelled people to reflect and consider the experiences of others, and made the concept of genomic medicine more tangible to those who perhaps were previously disconnected from the term.

Sadly, the COVID-19 pandemic cut the installation’s tour short, but every challenge provides fresh opportunity, and so this innovative experience has now been launched online on the University of Warwick website

This has enabled a fresh approach to reach broader audience online, as well as enhancing the content to deliver more compelling detail around each story. The new online version of i:DNA shares more insight from Felicity on the background to the research, as well as more detailed stories, panel discussions with people living with inherited diseases, and a tour of the art installation itself.

“We are delighted to bring I:DNA online to new audiences who may have missed it on the tour. By moving the installation online, we have been able to include both a talk on the research, as well as filmed interviews with people living with different genetic conditions, so you can hear directly from people whose stories have been represented in the art. You can also watch a panel discussion between the research and artistic team, and hear us answer questions asked by our audiences. It’s a fascinating topic area, and I:DNA calls on each of us to consider the future of genomic medicine, not only in terms of our health, but also in terms of society”

Professor Felicity Boardman – Warwick Medical School and Wellcome Genome Campus Society and Ethics Research

It’s both an authentic deep-dive into an emotive subject, and a digital set of resources for people from multidisciplinary spheres looking to broaden their knowledge and understanding.

“We are so proud to support the i:DNA project; it showcases how the synergy between medicine, social science and art can bring new perspectives to discussing genomics. It encourages us to reflect on where we are going with the application of genetic technology and helps each of us to reflect on our personal position in relation to this. I would recommend everyone working in genomics takes stock to listen to the voices of those with inherited disease”

Professor Anna Middleton – Head of Wellcome Genome Campus Society and Ethics Research Group

You can view all the online i:DNA content and resources on the University of Warwick website.