Kavli Centre for Ethics, Science, and the Public

The aims of the Kavli Centre for Ethics, Science, and the Public are to:

• Strengthen the social contract between scientific communities and diverse publics
• Engage public audiences at early stages in deliberating the ethical implications of science
• Deliver innovative and creative interactions with public audiences to achieve excellence in engagement

Recognising that both ‘the public’ and ‘scientists’ are mixed groups with many communities, values and interests, the Centre will pursue new ways to build bridges between….

• Public audiences
• Scientists
• Public engagement and communication professionals
• Ethicists
• Social scientists
• Community groups
• Health Professionals

[header image credit: Daniel Lonn, Unsplash]

Scientists can now edit the code of life (the genome) with relative ease and precision. However, the idea of permanently changing the human genome in future generations generates strong opinions. In the UK, as in most countries worldwide, it is illegal to perform genome editing on embryos that lead to pregnancy.

Whilst the editing process is not currently 100% accurate, scientists predict that it soon will be. This means that public audiences should be brought into the conversation now about the application of the technology so that policy makers can take account of societal perspectives when discussing the legislation. Being able to change the DNA of human embryos has been hailed as a game changer for potentially curing some hereditary genetic disorders from all future generations in a family. However, for cultural, religious, or ethical reasons, some feel the manipulation of human embryos is a step too far for society.

Families with a known genetic disorder already have the option to use genetic testing to try and have children who are unaffected by the disease. But these technologies don’t work for everyone.

THE CITIZENS JURY

For a week in September 2022, 21 people with personal experience of genetic disease travelled from across the UK to the Wellcome Genome Campus near Cambridge to sit as members of the UK Citizens’ Jury on Genome Editing. The Kavli Centre was a partner on this project, led by Wellcome Connecting Science.

A citizens jury typically involves a period of intense learning from experts, focused deliberations, voting on an ethical question and the writing of policy recommendations – and that is exactly what they did here. The citizens jury deliberated over 4 days on the following question:

Are there any circumstances under which a UK Government should consider changing the law to allow intentional genome editing of human embryos for serious genetic conditions?

The aim was to provide an insight into the perspectives of a group of patients with inherited genetic conditions on what they think about the benefits, risks and wider harms emerging from the application of embryo genome editing. The jury members were selected to broadly reflect the demographic make-up of patients who are eligible to use genomic medicine services and genetic counselling in the NHS.Their recommendations support policy makers, researchers and wider civil society to better understand informed public perspectives.

For more information, visit the project website at Wellcome Connecting Science.

What if … we took the data, the test tubes, the graphs, the squiggles on whiteboards, the lab coats, the safety glasses and the weird stuff in bottles out of the picture when we talked about science?

What if … we built a Lab that doesn’t look like a lab?  

What if … we asked career scientists and members of the public to join us in this Lab and talk about their feelings?

(We know. Horrifying, right?)

The Hopes and Fears Lab is a conversation experiment.

It is designed to be a place where everyone, whatever their background, can meet as equals and talk about the implications of cutting-edge science on the future we all share. 

It is designed by an artist to provoke creative, ‘out of the box’ thinking.  Actutally, it’s even made of boxes. Ordinary, everyday cardboard boxes which encourage us to unpack something together – in this case, our attitudes, our worries, our excitement, about science and what it can do for us.  

With a bit of luck, sitting down in The Hopes and Fears Lab might even help us move our assumptions about science, scientists, ‘the public’, and our future to a new place, together. One cardboard box at a time.

This Lab can pop up anywhere we want it to. We build it differently every time, depending on the people who join us there. 

It’s cheerful and playful and open. There’s no test at the end, no experts, and no ‘right’ or ‘wrong’ answers. Just a lot of great questions, and careful listening.

This Lab lets us share what we feel rather than what we know. 

And that’s the first step to ending up somewhere really interesting.

In the next three years, the Creativity for Scientific Change project will bring together a diverse group of scientists, artists, and members of the public to co-create a new model for public engagement. Through a three-stage, iterative-inductive case study methodology, the project will investigate the inner workings of scientific laboratory practices to uncover the origins and evolution of ethical concerns. By examining where and how these concerns arise, how they grow and persist, or ultimately fade away, the project aims to understand the lifecycle of ethics in the lab. Next, working with artists, the project will facilitate inclusive and multidisciplinary conversations between scientists and the public to explore the complex and often controversial implications of scientific and technological advancements on society. By bringing these conversations into public debate, the project aims to democratise science by incorporating public input into scientific decision-making.

[Image credit: Girl with Red Hat, Unsplash]