Gene Editing

Lord Bishop of Oxford Excerpts

Thursday 30th January 2020 Lords Chamber

[Lord Harries of Pentregarth (CB)]

My Lords, I thank the noble Baroness, Lady Bakewell, for introducing this debate with her usual clarity and for the extraordinarily powerful speeches that we have heard from noble Lords on all Benches, to which I have listened with great attention and interest.

In the past, I have had the huge privilege of being a member of both the HFEA and the Nuffield Council on Bioethics, and any contribution that I can possibly make to this debate is almost entirely indebted to that experience and what I learnt when I was a member of them. What first came out of my membership of the HFEA was a huge admiration for those working in the field of medical research. It is painstaking and exacting work, which I am sure the noble Lord, Lord Winston, can emphasise much better than me that for long periods can yield only disappointing results. Of course the results in recent years have been quite startling, as many of your Lordships have pointed out, so I will not repeat them.

The creative intelligence of the human mind in its capacity to discover and develop new forms of treatment for illness is a truly remarkable feature of what it is to be a human being, and a gift from the giver of all good things. Moreover, the Bible, if I am allowed to mention it, makes it clear that illness and disease are contrary to the will of the creator. They may for the moment be an inescapable part of being alive at all, but we are called on to alleviate pain and to cure illness whenever it is in our power to do so. It is remarkable how much in the Gospels is given over to stories of Jesus healing people. Using all our humanity ingenuity to overcome disease is not just what we want to do in our own interests as decent human beings, but from a Christian point of view it is co-operating with the work of a good creator.

All this may seem very obvious but it needs to be said because as we know, sometimes we hear accusations, particularly in the field of genome editing, that human beings have started to “play God”. It is not playing God, as the noble Lord, Lord Winston, emphasised, rather it is using our God-given gifts in the way they are meant to be used. According to the three great monotheistic religions of the world, we are made in the image of God. We are rational, creative beings able, within limits, to shape our human lives for betterment of our health and well-being.

That said, as all noble Lords have made quite clear, the cutting edge work now being done needs to be set firmly within an ethical framework. Every country in the world recognises this, including China, which recently took dramatic action to jail that maverick scientist. Within the overall framework of UK and European law, every research proposal now has to be approved by the appropriate research ethics committee. Furthermore, as we know, if it involves gametes, it needs to be licensed by the HFEA.

In relation specifically to genome editing, the Nuffield Council of Bioethics report of 2016 set out some important ethical considerations which it would be well worth continuing to take into account. That report was followed by another in 2018 that was specifically concerned with editing the genome of embryos, eggs or sperm; in other words, changing the genome not just of a particular individual, but for the benefit of future generations. This is allowed for research purposes if it is properly licensed by the HFEA, but it is not allowed in the UK for clinical application.

The Nuffield committee argued that it could perhaps be morally permissible on a case-by-case basis, provided that certain measures were first put in place. These are that there has been a sufficient opportunity for broad and inclusive public debate about its use and possible implications; that further research has already been carried out or needs to be carried out to establish standards of clinical safety; that the risks of adverse effects for individuals, groups and society as a whole have been appropriately assessed, and that measures are in place to monitor and review these. It adds that if it were ever to be permitted, it should be strictly regulated by the HFEA in the UK, introduced only in the context of a clinical study with monitoring of the long-term effects on individuals and groups, and that it should be licensed on a case-by-case basis. The two key ethical principles which have emerged time and again in this debate are that, first, they must be intended to secure and be consistent with the welfare of the future person; and secondly, that they should not increase disadvantage, discrimination or division in society as a whole. As we know, Huntington’s disease—with its devastating effects—is just one very obvious example where such a treatment would, if successful, be of immense benefit.

As we have heard, in principle it might prove possible not just to prevent a particular disease but for parents to have the genome of their offspring edited to enhance certain qualities. Suppose parents wanted their children to grow up muscular, clever, with blue eyes or whatever. That would potentially put those who pay for such editing in a position that might increase disadvantage, discrimination and division in society generally. The scientific community is quite rightly very cautious about the possibility of genes being used to enhance certain qualities.

In the light of these concerns, the council recommended, first, that there should be a widespread public debate—perhaps initiated by a government body—and, secondly, that without waiting for the report of such a debate, the Secretary of State for Health and Social Care should give consideration to bringing within the scope of licensing any heritable genome-editing interventions that currently fall outside its scope.

In the light of this debate, is there scope for a new House of Lords Select Committee—or, as I believe we are now meant to call them, an ad hoc committee—to deal with some of these issues? Some years ago we had a Select Committee for embryo research, which I had the privilege of chairing, with many distinguished scientists and philosophers who remain Members of the House.

I have two questions. First, in relation to somatic genome editing, is the present regulatory framework adequate or do we need something more overarching? Secondly, in relation to germline genome editing, should there be a moratorium or should it be licensed and strictly regulated? In this House there is clearly the strong view that there should be an absolute moratorium. The point is that this debate is not going away, and it would be very useful to have an authoritative body—a Select Committee from this House—to look at it very seriously and come up with a recommendation, either that there should be a moratorium or perhaps that it might be licensed by the HFEA on a case-by-case basis. I hope the Minister and his department will think seriously about the possibility of an appropriate committee.