On 30th January 2020 the House of Lords debated a motion from Baroness Bakewell, “that this House takes note of recent developments in the field of gene editing, and its status in scientific research around the world.” The Bishop of Carlisle, Rt Revd James Newcome, took part in the debate:
The Lord Bishop of Carlisle: My Lords, I add my own congratulations and gratitude to the noble Baroness, Lady Bakewell, on securing this timely and important debate. Unlike my noble friend Lord Patel and other noble Lords yet to speak, I am not a scientist. However, I have vivid memories of following the Human Genome Project with a mixture of excitement and awe as I realised its huge potential for good. I have been equally impressed by the many recent developments in gene editing, including the 100,000 Genomes Project and CRISPR-Cas9, which we have heard about, and their implications for the prevention or treatment of diseases such as cystic fibrosis, muscular dystrophy and cancer.
As our Library briefing makes clear, the benefits for personalised, precision human healthcare in particular could be enormous. The Church of England is supportive of what is going on, especially in the UK, which is leading the way. But, as always with progress of this kind, as we have already been reminded several times, several ethical considerations need to be taken very seriously and have already been mentioned. It is to those that I will now refer, given the generally accepted need of an ethical framework for all this work.
First, there is clearly a need to distinguish between research and its clinical application. Just because we have discovered that we can do something does not necessarily mean that we should do it, for a variety of reasons. In both research and application, it is essential to establish margins of risk for the participants. In the case of research the participants are of course embryos which, according to the HFEA code of practice, need to be granted “proper respect”. That respect is not easy to define but it means that they should never be viewed simply as commodities for experimentation or a means to an end. The 14-day limit for research on early embryos plays an important role here, since that is when the so-called primitive streak begins to appear.
Where clinical procedures are concerned, the participants will include donors, prospective parents and, above all, prospective children, as well as their eventual offspring. We need to consider every aspect of their well-being, including the psychological and social. At the moment, it really is not possible to know how subsequent generations of children might be affected by gene editing in their parents and grandparents. Interactions between genes might not come to light for several generations, so we need further research into the interrelatedness of genes before the clinical application of genome editing is likely to prove universally efficacious or safe.
Also, as we were reminded by the noble Lord, Lord Patel, there is a further distinction to be drawn between somatic or non-reproductive cells and germ or reproductive cells, as the Medical Research Council and others have made clear in the past. Human somatic gene editing does not present any novel ethical dilemmas but human germline genome editing has been aptly described as the bioethical equivalent of splitting the atom. This means its clinical application requires a very nuanced ethical approach. In particular, we need to be aware of unexpected outcomes and unintended consequences, such as deleterious changes in social attitudes; for instance, in our approach to disability and the stigmatisation of individuals.
As our Library briefing points out, there is also the danger—the noble Baroness, Lady Bakewell, referred to this—of facilitating eugenics or designer babies. The current consensus is clearly that such practices are ethically unacceptable. This raises the further ethical issue of human enhancement. The borders between treating illness, enhancing health and enhancing human performance and attractiveness are fairly porous, as we already know from periodic scandals in the world of sport. That needs more exploration before genome editing becomes a widespread clinical reality. So too does the question of social disparity, especially if clinical genome editing is to become primarily available through the private sector, as with IVF. This certainly needs to be adequately analysed and addressed. It was of course one of the two principles which the Nuffield Council on Bioethics insisted upon when commenting on the ethical acceptability of gene editing.
I remarked in opening on the huge potential for good that gene editing has, especially in the early prediction and diagnosis of certain diseases. I certainly believe that to be the case despite the ethical whirlpools which need to be negotiated along the way. Perhaps we also need to be wary of exaggeration and its attendant danger, genetic determinism. For instance, it has recently been proposed that all newborn children should be offered genomic testing. That in itself is fraught with ethical difficulties, from consent—who gives it?—through to subsequent applications for life insurance, although there is a current agreement on that.
Even more perplexing is the fact that many illnesses, such as cancer, dementia and heart disease, are not due to just one factor. As a recent article by Dr Phil Whitaker in the New Statesman points out:
“Numerous genes contribute to susceptibility and all interact in fiendishly complex ways with environmental and lifestyle factors. The risk estimates achieved by commercial genomics tests are no better (and may even be worse) than our current clinical judgements.”
That has been stated also by the British Society for Genetic Medicine. Even if the predictions are accurate, there may not be a lot that we can do about them apart from feel anxious, and we have more than enough anxiety around already.
We are asked in this debate to take note of recent developments in the field of gene editing. I for one am glad to do exactly that, with admiration for all the work that is going on, and enthusiasm, but not entirely without some ethical reservation.
Lord Alton of Liverpool (Crossbench): 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…
Baroness Brinton (LD): ..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…
Lord McNicol of West Kilbride (Lab)…I agree with the right reverend Prelate the Bishop of Carlisle and the comments of the British Society for Genetic Medicine, who advised that this could prove to be problematic as
“the genetic code of a healthy newborn will only rarely predict future disease accurately”— again, an issue touched on by my noble friend Lord Winston. The BSGM later stated:
“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.”
Lord Bethell (Con, Minister)…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…
..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.
Baroness Bakewell (Lab): My Lords, when I proposed this debate, I knew that it would be a good one because, as the noble Baroness, Lady Bottomley, said, people in this House know stuff. It has been great to hear so many different points of view.
Speaking personally, it is rare to find myself in agreement with two bishops—an agreement that I wholly endorse…