Collaboration Award 2023
UK Citizens' Jury on Human Embryo Editing
Project led by Professor Anna Middleton, Director Kavli Centre for Ethics, Science, and the Public , Faculty of Education, School of Humanities and Social Sciences
The Vice-Chancellor's Awards
for Research Impact and Engagement
About the researcher
Professor Anna Middleton is the Professor and Director of Kavli Centre for Ethics, Science and the Public and Assoc Director Engagement and Society at Wellcome Connecting Science.
Working in collaboration with Genetic Alliance UK, Department for Health and Social Care and Genomics England (until April 2022) and Nuffield Council on Bioethics (amongst others), this research highlights the pressing need for comprehensive public engagement in genomics, a concern recognised by the UK government.
The Vice-Chancellor's Awards
for Research Impact and Engagement
About the researcher
Professor Anna Middleton is the Professor and Director of Kavli Centre for Ethics, Science and the Public and Assoc Director Engagement and Society at Wellcome Connecting Science.
Working in collaboration with Genetic Alliance UK, Department for Health and Social Care and Genomics England (until April 2022) and Nuffield Council on Bioethics (amongst others), this research highlights the pressing need for comprehensive public engagement in genomics, a concern recognised by the UK government.
Thank you for initiating the incredibly important discussions.
What is the research?
Potential permanent alteration of the human genome has sparked global calls for urgent societal debate. In 2023, the UK government initiated a public consultation on the Human Fertilisation and Embryology Act. In anticipation of this, we delivered the first UK Citizens' Jury on Human Embryo Editing.
This connected patients with inherited diseases to experts in embryo research, genomic medicine, ethics, and reproductive medicine. The collaboration resulted in policy recommendations, shaping the future of embryo research for curing severe inherited diseases. This work has been captured in a filmed documentary, showcased at international film festivals, and shared with policymakers worldwide.
The team demonstrated that existing strategies lack validation and evidence to effectively engage diverse populations, particularly those not inherently interested in genomics or uncertain about its relevance to their lives.
Through global research involving 37,000 individuals from 22 countries and 16 languages, we uncovered a widespread unfamiliarity with DNA, genetics, and genomics, coupled with a mistrust in genetics research. The rapidly evolving nature of genetics poses a significant risk of technology translation that may clash with public values and perspectives.
We collaborated with genetics clinician societies worldwide to create recommendations for public engagement about human embryo DNA editing, advocating for transparent public and patient input into global policies. We continually strive to bridge the gap between society and science, seeking various creative avenues for evidence-based public engagement about genomics.
Building on our collaboration with Wellcome Connecting Science and the Centre for Deliberative Democracy at the University of Canberra for the Global Citizens Assembly on Genome Editing, we emphasise the necessity for systematic development of deliberative models. These models aim to gather public input regarding global genome editing regulations.
Our research highlights the pressing need for comprehensive public engagement in genomics, a concern recognised by the UK government
Future of the research
To maintain a reflective and evaluative approach, independent evaluators from the University of Canberra were commissioned to assess the quality and deliberative integrity of our process using a deliberative systems framework. The evaluation confirmed the high levels of rigour and deliberative integrity in our process.
Over the next 2 years the team will be collaborating with the University of Canberra on how to scale up the process to be adaptable in different cultural contexts and with different global public audiences.
Quick fire Q&A
Professor Anna Middleton
1
Have you ever had a Eureka moment?
My Eureka moment happened after a very intense year of loss and sadness in my family, when I fully got to appreciate that nothing is more important in life than the people we love.
2
What motivates you?
Warmth, kindness, support from colleagues and family. With this underpinning everything, I feel I can tackle anything.
3
If you could wake up tomorrow with a new skill, what would it be?
Telepathy.
4
What advances would you like to see in your field within your lifetime?
I would like to see genuine, authentic buy-in for public engagement and ethics, at Board level for all scientific organisations, so that the consideration of society is at the heart of science and not just a tokenistic gesture (which it sadly still is for many organisations).
5
What is the best bit of advice you’ve been given?
Be respectful, courteous and kind to everyone you interact with.
6
What do you do to relax?
TikTok, usually at 3am when I’m thinking about work!
7
What do you consider your greatest achievement?
Being the first academic to publish research which showed that members of the Deaf community may consider using pre-natal testing for deafness with the possibility to opt for termination of pregnancy for hearingness – thus challenging our definitions of ‘serious genetic disease’ and demonstrating that for many Deaf sign language-using parents, deafness is not a disability. This was my PhD research from 1996 and as an ethics case study is now commonly discussed in the training of genetic counsellors worldwide.
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