Gene Editing

Baroness Bottomley of Nettlestone Excerpts

Thursday 30th January 2020 Lords Chamber

[Baroness Bottomley of Nettlestone (Con)]

My Lords, I warmly congratulate the noble Baroness on introducing this debate of great importance. I admired her for suggesting that it was in the spirit of inquiry and concern, not as an expert; I echo her comment. The joy of this place is that we have many distinguished scientists and clinicians as well as many distinguished ethicists among the Lords Spiritual and many others, so this is the right place to discuss this critical subject.

I shall quickly declare an interest as a member of the international advisory council of Chugai, a research-intensive Japanese pharmaceutical company involved in a pioneering genomics analysis programme. I have not discussed this debate with the company, incidentally.

All are aware that nearly every human ailment has some basis in our genes. The recent advancements in genomics are among the most impactful and exciting developments in medical research. Research using genome editing is enabling significantly improved diagnostics and treatment of a range of diseases including cancers, diabetes and cardiovascular disease.

I want to go back 40 years to when I published a paper in the Journal of Child Psychology and Psychiatry on the management of families with Huntington’s Chorea— now called Huntington’s disease—an incurable inherited neurological disorder that severely damages co-ordination and mental abilities, often resulting in psychosis. At that time there was no way to predict who carried the gene until it was manifest in deteriorating symptoms and, inevitably, a prolonged and deeply distressing death. It was a family secret, a taboo subject. However, as life-changing genetic medicine has developed, remarkable progress has been made, as has just been suggested, such that we can now perform genetic testing on high-risk individuals before the onset of symptoms. Pre-implementation genetic diagnosis now allows us to test embryos produced using IVF in order to prevent those with HD genes being implanted and, consequently, prevent the offspring inheriting the disease. Just last year uniQure announced a clinical trial for a gene therapy solution, AMT-130, which aims to utilise a harmless virus to add extra genetic code to patients’ neurons to make them produce a chemical that lowers the mutant Huntington protein. This is the first AAV to enter clinical testing for the treatment of Huntington’s disease—a wonderful example, but just one of many, of the benefit that genome editing may bring.

My second phase in this topic was as a member of the Medical Research Council under the distinguished leadership of a former Leader of this place, Earl Jellicoe. Some 35 years ago there was great excitement about the work at Cambridge—involving Sir Keith Peters, the Regis Professor at Cambridge, a man who I have recommended for a place in this House more times than I have had lunch but, I am afraid, without success—that led to the establishment of the Sanger centre, which in 1992 became the Wellcome Sanger Institute. Those were early days. Never then did I anticipate the phenomenal scientific progress that the next 30 years would bring.

Part of my purpose, and a prime concern during my National Health Service work, was to bring our great research universities together with the great teaching hospitals to protect, enhance and develop our scientific and medical research—a great strength in the UK where we see ourselves as a global leader. As we leave the EU, it is all the more important that we protect and enhance our competitive strength, in which biomedical sciences are a leader.

There has been great leadership at the Department of Health and Social Care. Jeremy Hunt launched Genomics England. Given its vast potential, it is vital to see the UK in a leadership position. I pay great tribute to Sir John Chisholm, Jon Symonds and many others who have served there. The House will be aware of the excellent work the organisation has undertaken through the landmark 100,000 Genomes Project since the organisation was launched in 2013. The project, which saw the full genome sequencing of 100,000 patients with cancer or rare, infectious diseases, places the UK at the cutting edge of genomic science.

Similarly, I pay tribute to the last Chief Medical Officer, Dame Sally Davies, a wonderful woman who I know really well. I am delighted to say that she is now the first female master of Trinity College, Cambridge. She worked on many causes—antimicrobial resistance, obesity and much else—but showed real leadership on genome sequencing. She has earned vast admiration. One of her research areas was sickle cell disease, so she really knew the patient cost of that. As CMO, she called for a gene-testing revolution in the hope that whole genome sequencing would become as common as blood tests and biopsies. It may cost around £700 a patient, but it can improve diagnosis and care for a majority of patients, allowing doctors to tailor treatments to each patient’s needs.

While the patients who participated in the 100,000 Genomes Project all gave full consent for their biological data to be sequenced, there are still some who are troubled by the implications of this technology for their privacy. Dame Sally has always said that the data can be stored securely and anonymised, but I well appreciate this point. One of my greatest battles in my health role was a fight with the insurance industry, which would weight clients, if they had an HIV test, as though they were HIV positive. I felt passionately that this was so counter to public health, and I am pleased to say that it changed its policy in the end. However, anxiety about what will become of patient information is real and genuine.

The NHS Genomic Medicine Service continues to develop. The leadership shown by Jeremy Hunt has been taken up by Matt Hancock and there is a great deal of potential. Like others, my concern is regulation. The first Bill that I took through the House of Commons in my own right when I became Minister of Health was what became the Human Fertilisation and Embryology Act. Coming back to the points made by the noble Baroness, Lady Bakewell, public debate on that was so important. Hysteria and misinformation are quite different from rational, evidence-based logic and the problem is always how to communicate that, so I was delighted to hear about her recent conference. At that stage, we were trying to spread information. The noble Lord, Lord Winston, who is in his place, was very much part of the campaign at that time, as were many others.

There was a real danger that we would not get the Act through the House of Commons. I think the noble Lord, Lord Alton, was also there at that time. The Bill got a bit hijacked by the abortion debate. As ever, debates in the Lords were critically helpful and important. I remember drawing frequently on many of the Lords’ comments to take the work forward. Subsequently, I invited the noble Baroness, Lady Deech, to chair the Human Fertilisation and Embryology Authority, which she did magnificently. It has been said by the noble Lord, Lord Patel, and others that there have been light years of change since then, including MRT and much else.

The difficulties that we now need to consider are profound. I ask the Minister: how will we show leadership in regulation, nationally and internationally? It is complex and confused. It was 12 years from Louise Brown to the Human Fertilisation and Embryology Authority. How does he see the future?