1st Sep 2022
UK citizens’ jury to bring a patient voice to decisions about human embryos
Are there any circumstances under which the UK Government should consider changing the law to allow intentional genome editing of human embryos to prevent serious genetic conditions?
If the law were changed, what should the role of the private sector be? And, what type of governance and accountability should be put in place?
These are some of the challenging questions that will be put to 24 members of a jury who have lived experiences of a genetic condition.
Genome editing of human embryos has been hailed as a game changer for potentially curing some hereditary genetic disorder, however it is currently illegal in the UK and many other countries around the world. Stopping disease-causing genes from being passed on to future generations has the potential to eliminate these conditions from all future children and grandchildren. Some believe these potential benefits outweigh ethical reservations around the technology and that the law should be changed to allow families with serious and life-limiting conditions to be able to access the technology. However, others consider that in light of existing alternatives, the risks of embryo editing are not justified and that the existing regulation, that draws a line here, should be maintained.
Either for religious, cultural or personal reasons, some have a strong belief that the human embryo is not ours to manipulate. Further, some fear that the possibility of correcting disease-causing genes could lead society to be less accepting of disease and disability in general. Finally, there are concerns that, due to costs, the technology would be out of reach for many, meaning only wealthier countries or individuals could benefit from it.
The UK Citizens’ Jury
The UK Citizens’ Jury on Genome Editing will take place on the Wellcome Genome Campus between 13-16 September. The four day event is being hosted by Wellcome Connecting Science and Genetic Alliance UK, who have partnered with Involve, recognised experts in delivering and facilitating citizens’ juries around the UK.
The jury will have access to some of the leading experts on genome editing and the complex issues raised by this technology. They will reflect and engage in a series of group deliberations with trained facilitators. Through the process they will have the opportunity to collectively decide their recommendations on how genome editing technologies should be used for inherited conditions. These will be shared with the UK’s Department of Health and Social Care as well as the wider genetics, policy and academic communities, so that they can inform future decisions about the technology.
Professor Anna Middleton has commissioned the Citizens’ Jury on behalf of Wellcome Connecting Science and partners.
Some of the topic areas might feel challenging, and raise strong and difficult emotions for the jury. We will be creating a safe space where all perspectives and opinions are valid. By bringing together leading experts and jury members with lived experience of inherited conditions, we seek to allow thoughtful deliberation about what it means to be human and whether the manipulation of DNA has a place in our collective future.
Prof Anna Middleton, Wellcome Connecting Science
But what is a citizens’ jury?
Citizens’ juries have emerged as a public engagement and dialogue tool (often referred to as ‘deliberative democracy’) and are taken very seriously by governments around the world. They are used as a benchmark of public opinion, particularly on contentious policy issues. For example, citizens’ juries have been commissioned by governments to support their policies on gay marriage, abortion and climate change.
Why this, why now?
Scientists can now edit the human genome with relative ease and precision. However, the idea of changing the code of life (the genome) creates strong opinions. In the UK, as in most countries worldwide, it is illegal to perform genome editing on embryos that lead to a pregnancy. In fact, there is no clear proof that this has ever been done.
In 2018, a Chinese researcher, Jiankui He, announced the birth of the first babies whose genome he claimed to have edited. The news provoked immediate global condemnation. Jiankui He was later prosecuted and sentenced to prison in China, and to this date there is no clarity about the outcome of the experiment. The global consensus is that, at present, it would be irresponsible to proceed with genome editing of human embryos for reproductive purposes. Safety aside, the technology raises profound social and ethical issues. Public debate will be essential in order to decide whether or not genome editing should be allowed in the future.
The field of genomic technology, including genome editing, is advancing rapidly and people living with genetic conditions are likely to be the first to be affected by, or benefit from, these developments. It is crucial to understand the views of this community alongside those of the wider public. This is why the UK jury is particularly significant as it is made up of people with a lived experience of genetic conditions, either being directly affected themselves, parents, carers or family members of people living with a genetic condition.
Sophie Peet, Genetic Alliance UK
The UK Citizens’ Jury on Genome Editing is part of a series of national juries taking place around the world. These juries are designed to lead to the Global Citizens’ Assembly on Genome Editing. This will be led by a group of researchers from the University of Tasmania and the University of Canberra, and is being planned for delivery in Athens in the next few years. The aim is to contribute to shaping the public conversation and decision-making about genome editing technologies around the world.
The UK Citizens’ Jury as a creative project
The UK Citizens’ Jury on Genome Editing is also a creative project that seeks to visually tell the story of how the jury reached its conclusions. The entire event will be filmed by Green Eyed Monster Films in collaboration with Lambda Films, and released as a short documentary which we will share on our channels and via film festivals.