Using art as a platform to explore the ethics of scientific advances

I’m interested in the margins, the spaces between, where things connect or where there is absence. For over 20 years I’ve been using my arts practice to explore and challenge the ethical complexities of new genetic technologies. Why have I been so dedicated to this cause? Well, the easy answer is because I have a genetic condition myself.

However, the more nuanced and accurate reason is because I’ve seen the absence of engagement or debate about genetic technologies with the wider public, and specifically with those who live with genetic conditions. Yet techniques such as genetic screening and genome editing have the capacity to change society forever. In fact, they already are, and that concerns me. 

The people who are most likely to be affected by these changes are disabled people and people with genetic conditions, therefore it seems illogical and unethical not to make more effort to engage them with this discussion, and more importantly, listen to what we have to say.

Consequently, I was surprised, somewhat sceptical, but ultimately delighted that the Francis Crick Institute reached out to me to create a new artwork installed as part of their Cut + Paste exhibition. Did the Crick really want to hear what those of us with genetic conditions felt about genome editing and would they give us a platform for our voices to be heard? Well, it seems so.

Over the course of nine months, I worked with the support of creative producer Ruth Garde, to reach out to D/deaf and disabled people who live with genetic conditions.  During three online workshops I interviewed 15 disabled people, and had email conversations with many others, delighted that someone was at last listening to what they had to say.

The result is Lost Voices, an art film using verbatim script to explore ideas of identity, loss, discrimination, and prejudice, and how these experiences intrinsically connect to technologies such as genetic screening and genome editing.

The script is read by six disabled actors. It was important for me to work with disabled actors, as they too brought their own reflections on their life experiences, and many of them very closely matched those I had interviewed.

The interviews had recurring themes, one of them being the problematic relationship between disabled people and medics. At the heart of this challenge is the different way medics and scientists often view disability, as opposed to the way disabled people themselves experience it. This relates to a medicalised understanding of disability as a ‘deficit’ - something to be ‘fixed’, ‘irradicated’ or ‘cured’, rather than as an identity forming experience that many disabled people would not wish to change.  Lost Voices asks “would I be the same person if I were ‘cured’ tomorrow?”

This understanding of disability as deficit is also intrinsically linked to a ‘eugenic logic’. The troubling question of whether new genetic technologies that have been developed to ‘irradicate’ disability are actually a contemporary form of eugenics is a complex and nuanced issue that lies at the heart of Lost Voices. Which elements of human beings do we lose and at what cost?

It is this sense of loss and absence that resonated most strongly with me. Not only are disabled people’s voices largely missing from the discussion on genome editing, but we will soon become increasingly absent within society, as more genetic conditions are either screened or edited out. 

Shot in the style of Super 8 archive footage, interspersed with still portraits that drain of colour and fade to grey; I want the viewer to be left with a sense of nostalgia, a longing for what might be lost, occupying a space between presence and absence, past and future. I believe art has the capacity to disrupt, change minds, inspire discussion and connect people.  My hope is that Lost Voices is a powerful tool to broker a conversation between disabled people, scientists, medics, and the wider public. 

This isn’t a film which attempts to provide answers or be prescriptive about what you should think, it’s there to enable a space for reflection and debate about what it means to be human.

You can watch Lost Voices in full on our website or visit Cut + Paste at the Crick until December 2023.