We all experience life differently, due to our individual circumstances, identities, and interests. And sometimes the views and perspectives that we derive from our lived experiences means that we can make a unique contribution in all sorts of diverse areas. Lived experience of disability, health and illness, is particularly pertinent when considering genomic research and its applications in diagnosing and treating specific diseases.
For example, it is estimated that more than 2.4million people in the UK are currently living with a genetic condition. These includes disorders, such as cystic fibrosis or sickle cell anaemia, which are caused by variation in a single gene and can be inherited in families. In the future it may be possible to use human genome editing to treat or prevent serious genetic conditions. We believe that those with lived experience of these conditions can, and should, provide a valuable perspective to the discussion and decision-making around this topic.
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What kind of future do we want, in our lifetime, and who gets to decide? I don’t have the answers, or a preconceived idea of what the ‘right’ direction of travel should be, but I do know that as a society we’ve got to start talking, collectively.
Professor Anna Middleton, Associate Director Engagement and Society
In September 2022 we hosted a Citizens’ Jury in partnership with Genetic Alliance UK and Involve. The jury consisted of 21 individuals whose lives have been affected by hereditary disease. The Citizens’ Jury considered the 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 four-day event was the first time that patients, rather than policymakers or professionals, have been asked about their views on this complex topic. Each of the jurors had personal experience of a genetic condition and were chosen to provide a diversity of age, ethnicity, socio-economic, and educational backgrounds. Ultimately, the jury voted in favour of asking the UK government to consider changing the law to allow genome editing of human embryos to treat serious genetic conditions. One year on from their verdict, the jury members have remained in touch as a close network, and we continue to identify opportunities with policy-makers, healthcare professionals and scientists, to amplify their voices.
Three minute trailer
The UK Citizens’ Jury on Genome Editing was also a creative project that aimed to visually tell the story of how the jury reached its conclusions. The event was filmed by Green Eyed Monster Films, in collaboration with Lambda Films, and released as a short documentary.
The film has since been recognised at a number of film festivals, including; the Activists Without Borders Film Festival, Raw Science Film Festival, the London International Filmmakers Festival, and the International Social Change Film Festival.
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There are not many positives about living with a rare disease, but the experience of the Citizens' Jury has certainly been one of them. I am grateful to have had this unique opportunity to have my say on one of society’s most complex and significant.
A member of the member of the Citizens' Jury.
Cancer is a health condition that is likely to impact us all, either through a personal diagnosis, or through a friend or family member. The Cancer Research UK-funded Mutographs project, is led by Professor Mike Stratton at the Wellcome Sanger Institute, and aims to identify specific ‘DNA signatures’ in the human genome that are linked to cancer development. The Mutographs project team includes two patient advocates, Mimi McCord and Maggie Blanks, with lived experience of cancer, who have actively offered insight and challenge in support of the project and its researchers.
Over the summer of 2022, Damian Hebron and Dr Alessia Costa, from our Engagement and Society team, conducted a series of interviews with Mimi, Maggie, and several of the staff working on the project to understand how the process of patient advocacy had worked, what had gone well, and what might be improved in future projects. Their work is summarised in a report that we hope can influence the landscape for patient involvement and advocacy, as part of a shared research endeavour.
“Understanding more about our patient advocates experiences as part of this research has provided insights that we, and others, can use in future projects; working with the Connecting Science team enabled us to access different expertise, that supported our advocates to both contribute to the project, and reflect on the impact of these contributions.”
– Dr Laura Humphreys, Project Manager, Mutographs
