It is estimated that more than 2.4 million people are currently living with a genetic condition in the UK. This 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 UK, as in most countries worldwide, it is illegal to perform genome editing on embryos that lead to pregnancy. The NHS does offer a service to couples who carry a heritable genetic trait to screen IVF embryos, meaning only embryos without the inherited condition are implanted. However, this approach is not suitable for everyone.
In September we hosted a citizens’ jury in partnership with Genetic Alliance UK and Involve, recognised experts in delivering and facilitating citizens’ juries around the UK. 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 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.
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 21 jurors had personal experience of a genetic condition and were chosen to provide diversity of age, ethnicity, socio-economic, and educational background.
Over four days, the jurors heard expert testimony, reflected on their personal experiences, held guided discussions on the issues raised, voted on the question, and drew up a set of recommendations for policymakers. The jurors voted 17 to four that the UK government should consider changing the law to allow genome editing of embryos to treat genetic conditions, albeit with strong recommendations on how the process should be handled.
During their deliberations, the jurors reflected deeply on the meaning of suffering and their definitions of serious genetic disease.
They divided their recommendations into four themes:
- Develop an inclusive process for deciding whether to proceed with genome editing, with equity and diversity at its heart.
- Put in place effective support to ensure equitable access to treatment, including providing transparent information about treatments.
- Protect the rights equally of those who decide to proceed or not to proceed with treatment.
- Develop an equitable process and framework to reduce the wider social inequalities and the potential for harm.
“Though all the jurors had personal experience of an inherited genetic condition, their views on editing of human embryos were varied, nuanced and complex. Many of the discussions were emotional, and the responsibility felt by the jurors to represent wider society in their deliberations was clear. It was a privilege to see how individuals’ views shifted over the four days, as they heard from experts in various disciplines and from each other. When the Human Fertilisation and Embryology Act is debated in Parliament and discussions emerge on the editing of human embryos, it is imperative that the voices of patients are heard as part of this.”
Professor Anna Middleton, the leader of the project from Wellcome Connecting Science and the University of Cambridge
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.
Outcomes and next steps
We have published a citizens’ jury report which will be shared with policymakers. The report makes 15 recommendations centred around transparency, inclusivity and equal access to treatment that should be considered in deciding whether to legalise editing of human embryos to treat genetic diseases. You can also watch the documentary which gives an insight into how the jury reached its conclusions.
UK Citizens' Jury on Human Embryo Editing: documentary trailer
Not all disability involves suffering and disadvantage, so we should think very carefully about whether altering our genetic makeup for all future generations is what is best for society.
The jury’s nuanced message can now kick-start an important conversation with people living with genetic conditions.
The views of individuals most affected by genetic conditions are timely, with Rare Disease Day on 28 February, the Third International Summit on Human Genome Editing beginning on 6 March 2023, and UK legislation due to be debated in parliament later in the year.
With the first successful genome editing treatments recently deployed in adults and children involved in clinical trials, and more clinical trials at an advanced stage, many researchers and policymakers feel there is a need to begin the process of deciding whether, and under what conditions, genome editing of human embryos to treat genetic conditions might be permitted.
This is the first in-depth study into what individuals living with genetic conditions think about editing of human embryos to treat hereditary disorders. The decision on whether to act on the jury’s views now rests with policymakers.