Gene Editing

Lord Alton of Liverpool Excerpts

Thursday 30th January 2020 Lords Chamber

[Lord Alton of Liverpool (CB)]

My Lords, the whole House will want to thank the noble Baroness, Lady Bakewell, for giving us the opportunity to discuss this hugely important topical but also morally important question, which raises grave issues regarding the science and ethics of what we might do, especially regarding eugenics, to which the noble Baroness referred. I particularly endorse the remarks that were made by the right reverend Prelate the Bishop of Carlisle and the noble Lord, Lord Winston, who made an incredibly important speech in our debate today, asking us to consider the wider issues that are at stake here.

The noble Baroness will have seen the response of the British Society for Genetic Medicine to Matt Hancock and his ambition to conduct genomic sequencing of healthy newborns. It says that that could be “problematic”, because the genetic code of a healthy newborn

“will only rarely predict future disease accurately”—

a point the noble Lord, Lord Winston, reminded us about. The society says that it is important that

“children are not tested for adult onset conditions if there is no effective preventative intervention or treatment in childhood. Issues such as sample and data storage, access and retrieval also require detailed scrutiny”.

It says:

“Such a venture therefore needs to be carefully researched, and the ethical and societal aspects require careful consideration before roll-out to the general population.”


However, other forces are at work. This morning, I sent a letter to the Minister, the noble Lord, Lord Bethell, from the Royal Academy of Engineering, as well as my response. I was dismayed to see the phraseology it used in talking about gene editing, citing factors such as

“economic activity and sustainable and resource-efficient solutions to the societal challenges faced in food, chemicals, materials, water, energy … and environmental protection.”

If applied to humans—which has yet to be excluded—I admit that the language employed in the academy’s letter sounds rather disturbing. For example, it uses words such as “exploiting”, “explosive”, “market pull and technology push” and “commercialisation and industrialisation”. The Royal Academy of Engineering’s report also focuses on commercialisation to the apparent exclusion of ethical discussion, apart from a glancing reference to consumer choices in clothing.

Reference has been made in your Lordships’ House to earlier debates on the 1990 legislation, the establishment of the Human Fertilisation and Embryology Authority and the use of mitochondria. It is important to say in the context of such debates that we should not tantalise or raise expectations unduly. During our debates in your Lordships’ House on mitochondrial replacement, we were told that there would be cures and that they would be imminent. What progress has been made on clinical use since the licences were granted by the HFEA? It is an interesting precedent in the context of today’s debate.

One of my last contributions as a Member in another place before standing down was in a debate on genetics and embryology. I said:

“Legislation cannot be value-free or ethically neutral. A dirigiste or disinterested approach—marketplace genetics—simply would not do.”—[Official Report, Commons, 19/7/1996; col. 1444.]


So I cheered when, in December 2018, the World Health Organization established an expert panel to develop global standards for the governance and oversight of human genome editing. Its consultation closes on 7 February.

A year ago, in an article in Nature magazine, 18 scientists and ethicists from seven different countries called for

“a global moratorium on all clinical uses of human germline editing — that is, changing heritable DNA (in sperm, eggs or embryos) to make genetically modified children.”

My noble friend Lord Patel referred to this point earlier; I endorse entirely his call for a global moratorium for at least a five-year period. The scientists warned against using tantalising arguments to justify the risks and pointed to unknown dangers, including attempts to correct or modify susceptibility to one disease and unwittingly opening the way to another. They said:

“It will be much harder to predict the effects of completely new genetic instructions — let alone how multiple modifications will interact when they co-occur in future generations. Attempting to reshape the species on the basis of our current state of knowledge would be hubris.”


They warned of

“marketing pressure to enhance their children.”

They warned:

“Genetic enhancement could even divide humans into subspecies.”


They said that implications for

“future generations could have permanent and possibly harmful effects on the species.”

Very significantly, Jennifer Doudna, one of the two scientists jointly responsible for CRISPR-Cas9 gene editing technology, is cautious about its use in humans and calls for prudence. Her co-discoverer and co-inventor, Emmanuelle Charpentier, has far stronger reservations. She urges us to look for alternative approaches and, along with her colleagues, says that

“germline editing is not yet safe or effective enough to justify any use in the clinic.”

She says that, even with experience, study and future research,

“substantial uncertainty would probably remain.”

Against this background, around 30 countries currently have legislation that directly or indirectly bars all clinical uses of germline editing. Although a regulatory approach, which has been referred to, and an international treaty—perhaps mirroring those on chemical and biological weapons—is what I prefer, I recognise the challenge of securing such international agreement. Of course, UNESCO signally failed to create a legally binding convention outlawing human cloning.

However, we should at least attempt to secure voluntary pledges to prohibit the clinical use of human germline editing while a moratorium is in place. I like others’ suggestion of a global genome editing observatory to track developments and foster widespread debate. I welcome the Minister’s response to that proposal.

The urgency of tackling the wild west of marketplace genetics was illustrated by the way in which, in late 2018, the Chinese biophysicist, He Jiankui, ignored ethical and scientific norms in creating the twins Lulu and Nana, who were referred to earlier. His use of gene editing on embryos was not a correction of any existing disorder but an attempt to immunise the twins against HIV—an attempt at enhancement that appears to have introduced novel mutations. On 4 December, the Guardian warned:

“China gene-edited baby experiment ‘may have created unintended mutations’.”


Initial approbation turned to condemnation; as we know, He Jiankui is now in jail.

The Chinese Academy of Sciences is to be commended for its robust and unequivocal condemnation of He’s activities, which, it said, represent

“a gross violation of both the Chinese regulations and the consensus reached by the international science community. We strongly condemn their actions as extremely irresponsible, both scientifically and ethically.”

I hope that the logic of that argument will be extended when we look at issues such as DNA profiling and, although it is wider than today’s debate, when we think about the million Uighurs incarcerated in Xinjiang, all of whom have had their DNA profiled. I wrote to the Minister about this; although it is outside the scope of today’s debate, I hope that he will reply to my points and place a copy of that correspondence in the Library.

As the noble Lord, Lord Winston, reminded us, this is a week in which we commemorate terrible events. In December 1946, the so-called Doctors Trial opened the eyes of the world to the way in which medics and scientists had committed appalling and vile crimes against humanity. It must always be our objective to ensure that good science and good ethics march hand in hand and always go together.

--- Later in debate ---

[Lord Bethell (Con)]

My Lords, like other noble Lords I start by thanking the noble Baroness, Lady Bakewell, for calling this important debate and for instigating a broad discussion of complex themes around genome editing that deserve detailed analysis. I have followed her written and spoken career and note her important debate at the Royal Society and her excellent Radio 4 “Inside the Ethics Committee” programmes around this subject. I also thank my noble friends who have spoken here with great passion and experience today for their contributions. They say that in the other place the Minister is the person who knows the most about any subject, but in this place the Minister knows the least about the subject. I have never felt that aphorism to be more true than today, and I commend noble Lords on their remarkable experience and wisdom. My noble friend Lady Bottomley put it very well: this Chamber is filled with experts who have had a part in every aspect of this debate over many decades, and for that I thank them.

I am not immersed in this subject, as some noble Lords are, but I declare an interest as I know something of the ambitions for genome editing through my work as a trustee of the Scar Free Foundation, a medical research charity, where we hope a breakthrough will improve those blighted by unsightly or painful scars. I pay tribute to my noble friend Lady Blackwood in the Department for Health and Social Care and my noble friend Lord Gardiner in the Department for Environment, Food and Rural Affairs and to all those across Whitehall, Westminster, academia and industry who engage in this fascinating and broad subject.

It would be incorrect for any of us to consider the use of genome editing as heralding some sort of panacea. None the less, the opportunities posed to us by genome editing are quite incredible, and the Government are committed to seizing the opportunity but, as several noble Lords made clear, our work must be rooted in ethics and controlled by regulation, and that is where I will begin.

The noble Baroness, Lady Bakewell, and the right reverend Prelate the Bishop of Carlisle set the scene very well. I recognise the deep concerns of several noble Lords. My purpose is to reassure the Chamber that the UK has a robust, evidence-based regulation regime that is under rolling review to adjust to developments as they happen. It is true that UK regulators have adopted a pro-innovation regulatory approach but, as noble Lords have made crystal clear, it must be strongly rooted in public dialogue and ethical discourse. The Government’s efforts have created a safe space for UK innovators to develop cutting-edge, disruptive products that will transform the lives of people in the UK. This regime must be committed to upholding ethical values, personal safety and public acceptability. We rigorously test public attitudes to polarising issues such as human enhancement and social justice, which were mentioned in this debate, through engagement with the public because it is not just the science that matters but what we as a society want to do with it.

To find the right balance, we have committed to engaging world-class academics and expert groups such as the Progress Educational Trust, the Nuffield Council on Bioethics, and the Wellcome Trust, which were mentioned by a number of noble Lords including the noble and right reverend Lord, Lord Harries, the noble Baronesses, Lady Bakewell and Lady Brinton, the right reverend Prelate the Bishop of Carlisle, and the self-confessed and unashamed gene editor the noble Lord, Lord Winston.

We are fully aware of the challenges presented by this technology and the anxieties it raises among some people. In response to the question about leadership asked by my noble friend Lady Bottomley, I say that we embrace our leadership role where necessary in the EU, the World Health Organization and the numerous emerging forums on this hot subject. For instance, in the wake of the revelations of germline editing mentioned by several noble Lords, the UK joined our counterparts from the US national academies to bring together a consortium on ethics at the World Health Organization. This consortium is currently accepting evidence on this issue. The deadline is 6 February, so I urge all noble Lords who can contribute to hit that cut-off date.

In response to the noble Lord, Lord Alton, and others who asked about a global observatory, I can tell them that we look forward to the World Health Organization report and the prospect that it may lead to the rollout of a global observatory.

As a number of noble Lords, including the noble Baroness, Lady Bakewell, mentioned, what happened in China is completely illegal in the UK, but globally standards and regulations differ, which is a challenge when it comes to the pursuit of ethical science, so Britain must have a clear and definitive voice. That is why we have set up the Centre for Data Ethics and Innovation to get the balance right. As a result of this leadership, a safe place has been made in the UK to turn our country into a renowned hub for genome editing, allowing us to attract and nurture businesses.

The noble Lord, Lord Patel, spoke persuasively for a commission based on the consultation on mitochondrial disease and regulations amending the Human Fertilisation and Embryology Act 1990. The noble and right reverend Lord, Lord Harries, suggested a House of Lords Select Committee. These ideas are worthy of consideration by the Government, and we will look closely at them. However, I emphasise that the issues brought up by genome editing are very broad, not specific, and we are already engaged in considerable public and expert consultation.

If we get the ethical framework right, the opportunities are enormous. The noble Baroness, Lady Bakewell, mentioned Louise Brown, the first IVF baby. I have Elizabeth and Rosalie, my two IVF babies, and very beautiful and bouncing they are too. Their embryos were screened. I remember the moment well, and I remember the ethical conversation I had with my wife before we went ahead with that. I take seriously the comments of the noble Lord, Lord Winston, about the need for follow-up research. It is on the mind of parents such as me around the world.

As a number of noble Lords mentioned, there are opportunities for genome editing to create new types of medicines for tackling a range of conditions and improving the lives of patients. Who could not be moved by the story of David Sanchez in last week’s “Storyville” on the BBC? He is a charismatic young boy with sickle cell disease who described his wait for advances in genome editing that could mend the single-digit mistake in his DNA and save him from a painful affliction and an early death. The noble Viscount, Lord Hanworth, my noble friend Lady Bottomley and the noble Baroness, Lady Bakewell, mentioned rare diseases, and I was struck that up to 17% of the UK population may be affected by diseases such as Huntingdon’s. That is why we are so excited by advanced therapies. An example is CAR-T treatments. They are new, personalised, precision medicines that work by taking immune cells from a patient, reprogramming and using them to target cancers within the body. That excitement is why the NHS moved fast. It is the first health system in Europe to agree full access to CAR-T treatments. That was achieved through the fastest product approval in the NHS’s 70-year history.

We are ensuring that it is not only laboratory research to which the NHS has access. There are six licensed gene therapy products, including Kymriah, a cancer therapy, and Strimvelis, the bubble-baby therapy. More than 70 companies are developing advanced therapy medicinal products in the UK, such as Autolus, which looks at T-cell immunotherapy, and Oxford Biomedica, which looks at Parkinson’s disease. The noble Lord, Lord Patel, gave us an expert read-out on the progress of these sorts of initiatives. These business which productise research are exciting evidence of the success of our life sciences industrial strategy.

The noble Baroness, Lady Brinton, asked about the genetic screening of children. This is a huge subject, and I do not have time to delve into it in huge detail, but I reassure the House that the Government are starting with those with severe illnesses. Yesterday the Government announced that a pilot of exome sequencing would be extended to whole-gene screening and that we are hoping to process hundreds of cases a year, starting this year. The department is looking at ways of extending these trials dramatically.

The noble Baroness, Lady Brinton, also asked about palliative care. I reassure the House that the focus is very much on diagnostic and preventive opportunities, although there might be opportunities in pharmaco- genetics. She also asked about the genomics healthcare strategy. I reassure noble Lords that the aim is to have this published by the end of the year.

A number of noble Lords mentioned the economic opportunity presented by these medical advances. Advanced therapy companies already employ 3,000 people and that number is set to more than double by the end of 2024. Estimates are that this sector could be worth £10 billion a year to the UK by 2035.

A number of noble Lords mentioned government interventions. Since 2009, over £300 million of government investment has been committed to support commercial research and innovation in cell and gene therapies. Initiatives include the Cell and Gene Therapy Catapult and advanced therapy treatment centres. I shall give an example. As several noble Lords mentioned, the Medical Research Council is funding research into the earliest stages of human development. The team working on this research is based at the impressive Francis Crick Institute in King’s Cross—the first globally to embark on this sort of research. The work, which is ongoing, might help us better understand the development of embryos during pregnancy, and it is hoped that it will help to explain and prevent miscarriages.

An important point was raised by the noble Lords, Lord Patel and Lord Alton, and my noble friend Lord Moynihan. They suggested that it might be time for a moratorium on germline editing. I reassure the House that at present the researchers, the regulators and the Government are satisfied by the regulations as they are. However, the Government totally acknowledge that the Crick team’s research, and that of others in the future, might make suggestions for future reviews or a moratorium should the position change. The Government also acknowledge that those suggestions should be debated in Parliament and that they might lead to future regulation or legislation.

The tools of the fourth industrial revolution touch many sectors—too many to cover in this debate—but a number of noble Lords, including my noble friend Lord Ridley and the noble Baroness, Lady Bennett, mentioned agriculture. If the House will indulge me, I will take a brief moment to praise our fantastic British produce. It includes Welsh lamb and fantastic English wines that rival French champagne, and I need not remind the noble Lord, Lord McNicol, of spirits such as Scotch whisky which are renowned the world over.

As our climate changes, we may need to take steps to protect our food industry from warming temperatures or new pests and diseases. It is important that, should a time come where we need them, we have tools at our disposal and are sure that they will work. Genome editing and other technological advances can enable higher-yield varieties of staple crops so that we can feed our growing population or help our native varieties to withstand future conditions as our climate continues to warm.

As described by my noble friend Lord Ridley, the European Court of Justice has, regretfully, ruled that all genome-edited organisms should be treated as genetically modified. That is a shame. The Government feel that this ruling is neither scientific nor justified. As I have said previously, we would prefer a science-based, evidence-driven approach to regulation in this space, and we will revisit what regulations it might be appropriate to consider as the future landscape and our relations with the EU evolve in the coming years.

The Government are supportive of new applications for genome editing in other emerging fields that are too numerous to mention. However, I should like to refer to synthetic biology, which might allow us to make new medicines, fuels or other substances faster and more efficiently than ever before. For instance, we have seen the collaborative approach taken by government and industry in the development of the life sciences sector deals and the bioeconomy strategy. We have also seen groups such as the Synthetic Biology Leadership Council and a host of partnership programmes. The UK’s academic facilities in this exciting area of science are second to none, and they include the noble Baroness, Lady Bakewell’s very own BRIDGE Lab for genomic research at Birkbeck University.

The Government are proving their passion for science, having recently committed to double the science budget. I reassure the noble Baroness, Lady Brinton, that the manifesto at the last general election and the Prime Minister’s statement after his successful leadership election made very clear the Government’s long-standing commitment to budgets in this area. These will enable the best research to take place in the UK, create new jobs across the country and support sectors that are crucial to the UK economy.

By way of closing, I again thank the noble Baroness for proposing this debate. It has not been possible to answer all the questions, so I will endeavour to write. I am reminded that that includes writing to the noble Lord, Lord McNicol, on GM food and trade deals, and on UKTI’s work on identifying investments in innovation.

[Lord Alton of Liverpool]

My Lords, before the noble Lord concludes, I pressed him during the debate to reply to the correspondence that I sent him about DNA profiling. Can he undertake to place that in the Library of the House when he has answers?

[Lord Bethell]

The noble Lord, Lord Alton, is entirely right. I shall be glad to write to him on DNA profiling. It is felt to be a little outside the scope of this debate but I will be glad to place such a letter in the Library, as requested. I thank each and every noble Lord who has spoken today for their contributions, and I look forward to this important subject being revisited in the future.