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Background to I:DNA

I:DNA is a Wellcome Trust funded project that was created to engage the public with research led by Professor Felicity Boardman, in conjunction with Dr Corinna Clark, at Warwick Medical School. The research explores the experiences of people living with inherited conditions and their attitudes towards genetic medicine.

While the general public generally have limited (or no) knowledge of genetic conditions, it is estimated that most people are a ‘carrier’ of at least one genetic condition. This means that they will have one copy of a gene that is associated with a genetic condition, but they will not have the condition themselves (because they also have one fully functioning gene copy). However, their children, or grandchildren, could potentially have the condition if they inherit a second faulty copy of the gene form their other parent. Cystic fibrosis is the most common inherited condition in the UK with around 1 in 25 people being a carrier, though most people be unaware that they carry cystic fibrosis until they – or a family a member – has a child diagnosed with the condition.

There is increasing incorporation of genomic medicine into healthcare nationally and internationally. For example, genetic screening programmes, which screen healthy individuals at a population level, rather than diagnostic genetic testing for people with symptoms of an illness. In the UK, for example, the NHS are piloting whole genome sequencing in up to 200,000 newborn babies. The increasing use of genetic screening means that more people than ever will have access to their (or their child’s) genetic information. This information can be used to inform an individual’s healthcare and reproductive decisions, but will also have significant social and ethical consequences for future generations and wider society.

Historically, the views of people already living with genetic conditions have been underexplored in debates about the pros and cons of genetic screening. Yet, they can offer important insights into what it is like to live with a genetic condition, the complexities around their own reproductive choices, as well as their perceptions of what ‘a life worth living’ is. Their views are also important to debates around how genetic screening might change wider society, such as preventing the birth of babies with genetic conditions, and how this could impact on those people living with genetic conditions, though, for example, greater stigma and reduced investment in treatments and support.

Through her work, Felicity has ensured that the voices of people with ‘lived experience’ of genetic conditions are included in debates about genetic screening at a policy level (e.g. UK National Screening Committee). Publicising their viewpoints and experiences to as wide a ‘lay’ audience as possible is critical to the wider research aims, of informing ethical debates at a societal level and educating the general public about the different viewpoints surrounding the use of genetic technologies.

There were three key reasons for creating an art installation: firstly, to bring the research to audiences who may not otherwise engage with complex and sensitive research concepts. Secondly, to provide a novel experience that would challenge people to (re)evaluate their knowledge and preconceptions about what living with a rare condition and/or disability might mean. Finally, to stimulate reflection about how this new knowledge might affect any future ‘genetic decisions’ they may be faced with making. Arts-based public engagement methods have been shown to be effective and accessible means for communicating sensitive research topics in a way that allows the audience room to reflect and form their own views1.

I:DNA Installation and Tour

The installation was created in collaboration with a digital theatre and media company, STAMP CIC. Visitors entered the installation through an arch designed to look like an airport body scanner. The focal point of the installation was a large metal sculpture, based on a denaturing DNA helix, with an immersive video/soundscape. The soundscape consisted of spoken and sung verbatim quotes taken from interviews with research participants. Our research participants have lived experience with haemophilia, spinal muscular atrophy, thalassaemia, cystic fibrosis and fragile X syndrome. Alongside these highly personal accounts, video screens displayed filmed portraits of a wide range of diverse faces, highlighting that genomic medicine affects everyone in society. These images were interspersed with statistics about genetic technologies and the frequency of inherited conditions in the general population.

The installation began its tour in 2019, with a preview on the University of Warwick campus (Chaplaincy) followed by an evening showcase at Fargo Village (Coventry) as part of the British Science Festival. This was followed by Oxford Science and Ideas Festival (IF Oxford, October 2019), Coventry Cathedral (part of ESRC Festival of Social Science, November 2019), Millennium Point (Birmingham February 2020). Finally, I:DNA had a 9-month residency at Leamington Spa Art Gallery & Museum (April 2021-January 2022) as part of their 20-year anniversary “Picture of Health: Art, Medicine & the Body” exhibition, completing its tour in January 2022.

1Ball et al, 2021. Arts-based approaches to public engagement with research: Lessons from a rapid review . Santa Monica, CA: RAND Corporation, 2021.