Lord Patel
Main Page: Lord Patel (Crossbench - Life peer)
Lord Patel (CB)
My Lords, I thank the noble Baroness for initiating this debate. Although I agree with much of what she has said, I have a different viewpoint of how the science might develop. It is right and proper that society decides what science output to control and whether it is right for society to benefit from it if it harms society.
Perhaps I may start from a different angle. This is a story of another time—of a plausible future 20 or 30 years from now—in which the human experience of life and health, and perhaps even who we are, will unfold unlike anything we have known hitherto. In future, citizens will learn early in life, through a combination of intelligence gathered from their smart accessories, embedded devices and more accurate information from genetic testing, their predisposition to disease—whether they are heading towards disease, depression, dementia or any other condition.
More importantly, they will have a choice of an exit strategy . They will be able to choose a familiar route of medication, behavioural change or lifestyle change, or they might choose novel treatment paths. Those predisposed to disease will be able to have their risky DNA removed or altered. Those with neurological conditions might be treated with brain implants, and even cognitive function might be restored by a cling-film-like membrane or hair-like wires inserted into the brain to restore neuronal connections.
Brain implants are already in use in tens of thousands of patients with epilepsy, tremors, seizures, Parkinson’s disease and even some conditions related to mental health. If such treatments were effective and safe, who would not choose them to divert the course of their illness? Yet our genes and neurons are more than origins of our illness; they are also part of our substrate, our being, our humanity. Would manipulating them risk altering who we are?
Yet we cannot stop science and scientific developments that may make people’s lives better. As humans, we have been shaped by our discoveries: stone tools, fire and its control, eye glasses, electricity, antibiotics, nuclear physics, organ transplants, in vitro fertilisation and the internet, to name but a few.
Yet there is something different—some may say exciting—about gaining mastery over our DNA and brains. Our complete set of DNA, its molecular code and how it is expressed give rise in each and every one of us to a singular life. In modifying DNA in human cells, we turn them into living drugs. Since 2003, over a dozen gene therapy treatments have been approved to treat cancers and other disorders, of the eyes, blood and neuromuscular systems. The technology holds promise for countless cures.
Jennifer Doudna, who is known for her work on CRISPR-Cas9, says that, in less than 30 years,
“it will … be possible to make … any kind of change to any kind of genome”.
Because of the power of the technology, she and many others have called for a moratorium on germline editing of the human genome.
Developments in somatic editing of the human genome are quite different. This is not germline editing. Genome editing and somatic editing hold out great promise for the treatment of diseases caused by genetic mutations. There are over 75,000 genetic mutations that cause inherited diseases. Unlike in germline editing, the changes made in somatic editing are not passed on to future generations.
Several CRISPR-related therapies are in early phase trials for somatic genomic editing: editing patients’ T cells for treating cancers; boosting foetal haemoglobin in sickle cell disease; editing donor cells to treat non-Hodgkin’s lymphoma; editing photoreceptor cells to treat inherited blindness. Even in the UK, there are trials related to somatic genome editing; the CRUK-AstraZeneca Functional Genomics Centre does much of the work. The UK was the first in Europe to make CAR-T therapy, as it is today, available to cancer patients.
There is still a lot of science to be done to make these treatments safer and more effective. This will happen as more new technologies develop. CRISPR-Cas9 is not now likely to be used; it will be replaced by more accurate baseline and intermediate editing, which target a single nucleotide. ACGT nucleotides make up the amino acids of DNA. The transfer of one A instead of a C may cause a mutation and a disease; editing that into a normal sequence would cure the disease permanently.
Newer technology for base editing and prime editing, as I mentioned, holds much more promise. Germline genome editing in embryos to create genetically modified people is different, and ethically fraught. In my view, there should be a global moratorium on this for at least five years; it would not include a moratorium on research, because we can learn a lot of science from research into germline editing which may help in other areas.
There is a need for better regulation. We are lucky in the United Kingdom that we have a regulatory authority that can exercise this function to regulate practices that might be unethical, including research on embryos. The authority has granted one licence for research on genetically modified embryos. It may grant others if it is satisfied that they are necessary. But there are gaps that need to be filled. Hence, I ask the Minister to address this.
When the Human Fertilisation and Embryology Act was enacted, it was in the context of the science then, but now things have changed because the technology and the science have advanced to a point where it is not just human embryos that we can modify. It could be done on gametes produced outside the body or in vivo to gametes, so there is a need to change the Act so that it meets those changed circumstances. The definition of a woman has also changed, with trans women and other issues, so we need to look at the legislation so that it meets the current status.
The second aspect is that, as the noble Baroness has already mentioned, we need to have a wider consultation with the public such as the Government had before mitochondrial transfer was legalised. That took three years of experts and patients’ panels looking at the evidence. I hope the Government will do that with genomic editing.