Baroness Brinton
Main Page: Baroness Brinton (Liberal Democrat - Life peer)
Baroness Brinton (LD)
My Lords, I congratulate the noble Baroness, Lady Bakewell, on securing this important and timely debate on developments in gene editing. She set the scene to allow the widest of debates. I think we can all agree that we have had an extraordinary, wide debate.
The noble Lord, Lord Patel, said that our genes are part of our humanity, yet we cannot stop science. There is much to be done to make it safe and effective. The noble Baroness, Lady Bakewell, the right reverend Prelate the Bishop of Carlisle, the noble Lord, Lord Alton, and the noble and right reverend Lord, Lord Harries, talked about the ethical and social justice issues that must be considered alongside scientific advance if we are not to slip into eugenics. I always learn so much from the contributions of the noble Lord, Lord Winston, and his outstanding speech summed up the dilemma very well as eugenics versus “a reasonable individual intervention”, which encapsulates the moral dilemma we have been discussing. The noble Viscount, Lord Hanworth, reinforced the need for a careful public debate and for clear regulation. The excellent speech by the noble Lord, Lord Moynihan, reminded us that athletes are always under pressure to find that extra advantage. I think many of us agreed that there is no place for gene editing in competitive sport. The noble Viscount, Lord Ridley, and the noble Baroness, Lady Bennett, rightly reminded us that we need to include agriculture and the environment in our debate—equally thorny issues to get right. Current parameters and frameworks should be reviewed and updated as science improves and takes us forward.
From the Liberal Democrat Benches, we echo many of the concerns about social and health injustices—for example, developing genetic techniques that might improve an embryo so that the child has enhanced intelligence, a longer life and so on. If that is available only to the wealthy, or in wealthy countries, how do we ensure that those not so enhanced are not at a permanent disadvantage that cannot be rectified? This is not fantasy. We know that when in vitro fertilisation became available, some communities used it to choose the gender of their child. We must guard against that.
I want to talk about genome editing and children with rare diseases. I thank the Library, the Francis Crick Institute, the Progress Educational Trust and, especially, Together for Short Lives and Great Ormond Street Hospital, for their excellent briefings.
Over 70% of rare diseases have an underlying genetic cause, and most, including all childhood cancers, present in childhood. Inevitably, our children and young people are disproportionately affected. These diseases are serious: one-third of children with a rare disease will not live to see their fifth birthday.
Treating rare diseases has been extraordinarily tough. It has been about the management of symptoms, often with severe side-effects that are hard for small children to understand and tolerate. There are some curative treatments, such as bone marrow transplants, but they rely on donors, and children must live with the risk of tissue rejection. As these children grow older, their symptoms may worsen, with many not surviving. The exceptional developments in genome editing and research, which noble Lords have already spoken about with such eloquence, can transform the lives of children with rare diseases. Genetic diagnosis can be achieved before symptoms begin to show. Early intervention to correct the genetic error could provide a long-term barrier to disease, sparing children from developing debilitating symptoms and suffering cumulative, irreversible damage to their bodies. Unlike treatments such as bone marrow transplants, the patient’s own cells can be modified, making the treatment perfectly matched, with no risk of rejection.
However, rare diseases that individually affect very small numbers, but collectively might affect millions, can struggle to attract research funding. Genome-editing technologies can be applied across a broad range of diseases and may therefore be more likely to attract funding. They can be adapted and applied to benefit isolated patient populations, but there is still a risk. The 100,000 Genomes project, delivered by Genomics England, a company owned and funded by the Department of Health and Social Care, was established in 2012 to sequence the 100,000 genomes from NHS patients affected by a rare disease or cancer. In December 2018, the project ended when the 100,000th sequence was achieved. The Health and Social Care Secretary, Matt Hancock, announced
“an ambition to sequence five million genomes in the UK over the next five years.”
In November 2019, Mr Hancock also confirmed his ambition to see all children receive whole genome sequencing at birth, saying that tests would be routinely offered to map out the risk of genetic diseases and offer predictive, personalised care. Today we have heard concerns about how this would operate without a clear moral and legalistic framework. What progress have the Government have made in achieving the Secretary of State’s ambition that all children should receive whole genome sequencing at birth? What assessment has the Minister made of the extent to which mapping genetic diseases can offer personalised palliative care for children with life-limiting and life-threatening conditions?
In July 2018, the noble Baroness, Lady Blackwood, spoke at the British Paediatric Surveillance Unit’s rare disease summer tea party. She said that
“seriously ill children who are likely to have a rare genetic disorder will be offered whole genome sequencing under the GMS.”
To continue cementing the UK as a world leader in genomics, in February 2019 she announced that the Government were
“developing a UK genomics healthcare strategy. I’m very pleased to say that the work is well underway, and the strategy will provide a clear, national vision, setting out how the genomics community can work together to make the UK the global leader in genomic healthcare.”
She went on:
“The strategy will be ready for publication this autumn, so watch this space.”
That is now last autumn. Can the Minister tell us how many seriously ill children who are likely to have a rare genetic disorder have been offered whole genome sequencing under the NHS Genomics Medicine Service? When does she expect the Government to complete the UK genomics healthcare strategy?
For rare diseases, genetic understanding is the key to getting this right. Our scientists and clinicians need infrastructure, technologies and collaboration. To develop effective gene-editing approaches, the UK must advance understanding of what, how and when genetic changes occur in a child’s development and how they cause disease. This will help to diagnose problems more quickly and accurately, and to understand which treatments are most likely to work for each child. Clinicians will be better able to predict the risk of genetic diseases and their progression, and to develop treatments such as genome editing, to eradicate these diseases.
Two years ago, Great Ormond Street Hospital became one of seven genomic laboratory hubs commissioned by the NHS to deliver the nation’s genomic sequencing. The initiative builds on the 100,000 Genomes project, in which the hospital played a leading role, as well as rapid genome sequencing techniques developed there that read an entire genetic sequence in a matter of days. This approach will underpin the development of gene-editing approaches.
The Zayed Centre for Research into Rare Disease in Children, based in Great Ormond Street, opened last year. It is the world’s first purpose-built centre dedicated to paediatric research into rare diseases. It has a six-room suite that adheres to strict requirements to manufacture therapeutic, gene-edited cells which can then be returned to patients. Facilities with this capability are extremely rare; there are no comparable labs elsewhere in the UK at present.
None of this will be achieved without proper long-term funding of research. The UK’s leading role in the European Union’s Horizon 2020 project must necessarily come to an end tomorrow, as we leave the EU. It is worth noting that in Horizon 2020, we contributed £3 billion and received £5 billion back in research grants. Because we lead research in many areas, we have been net beneficiaries. Can the Minister confirm that funding and research for genome sequencing will continue at least at the same level, to ensure that we continue to lead the world in genome research?
I close with a personal example. A family I have been working with for the last five years had a child with a rare disease that was undiagnosed. He died 18 months ago, aged 10, having been treated at Great Ormond Street Hospital. Just after he was born, he had his first gene test, but the cause of his multiple and profound problems could not be found. Just before he died, the hospital asked his mother if it could take another sample, as genetic testing had clearly moved on a great deal. This week, it identified the disease, which is extremely rare. Most children, if they survive the first three months, die within three years. Their son is an example to look at in the future, when caring for children born with this disease. The family are very proud.