In Vitro Fertilisation: 40th Anniversary

Lord Harries of Pentregarth Excerpts

Thursday 13th September 2018 Lords Chamber

[Lord Harries of Pentregarth (CB)]

My Lords, I pay tribute to the noble Baroness, Lady Deech, for the opportunity to engage with this subject at a very timely moment. I pay tribute also to her role as chair of the Human Fertilisation and Embryology Authority. She was a very successful chair at a crucial time in the development of the authority. Perhaps it is also appropriate to pay tribute to the noble and learned Lord, Lord Mackay of Clashfern, who, as he indicated, played a very significant role in steering the legislation in the first place. I had the privilege of serving at a slightly later period as chair of the House of Lords Select Committee on Stem Cell Research, which allowed stem cells to be made from embryos.

I also had the privilege of serving as a member of the HFEA and as chair of its ethics committee from 2002 to 2009. It might help your Lordships if I try to give a feel of how the committee works. We have heard some very important points, particularly from the noble Earl, Lord Selborne, about legislation for the future. The HFEA, I think we all agree, provides a very good model for whatever might emerge in the future in relation to gene editing, so I shall give a little feel of how it actually works. It is, above all, a deeply serious and responsible organisation, as it ought to be, dealing as it does with human embryos. Its membership is made up of medical scientists, clinicians and representatives of other groups which have a major stake in this field—such as parents—as well as people with legal and ethical expertise.

The HFEA was set up by the will of Parliament and is controlled by law. Very great care is taken at every point to ensure that this is so, with a lawyer present at all key decision-making points. The guiding principle, enshrined in law, as we know, has been the 14-day rule, originally recommended by the Warnock report and accepted by Parliament. Research may take place on embryos only up to 14 days. This is a happy conjunction of law, science and ethics, for 14 days is about the time of the formation of the so-called primitive streak and the beginning of the nervous system, after which the embryo is individuated and not just a bunch of multiplying cells. This means that record-keeping needs to be and is meticulous: every single embryo has to be recorded and accounted for. As well as the regular inspection and licensing of clinics, a key element in the work is granting licences for ground-breaking research and for new forms of treatment. How this operates is that a horizon-scanning group, involving top medical scientists, surveys what is happening in research around the world and then makes a judgment of what might in the next years be of relevance to fertility treatment. It will then be sifted through the ethics committee before coming to the full board for a possible licence when an application has been made. The procedure is extremely thorough and serious and good time is given for it.

As a result of such procedures, pre-implantation genetic diagnosis has come to be used in connection with parents who are carriers of a hereditary condition. Initially, it was possible only for single-gene disorders such as cystic fibrosis but now it is possible to screen for about 400 serious diseases. A number of eggs are fertilised, then only one which is free from the disease is implanted in the womb. This is a truly wonderful advance—just one of a number—sparing thousands of children and parents years of suffering, heartbreak and early death. Another advance is in relation to mitochondrial disease, as we have already heard, a research licence for which was granted in my time on the HFEA. Since then treatment licences have been given, again sparing so much hurt, pain and suffering. In vitro fertilisation is not a comfortable procedure and its success rate is unfortunately not very high, so it is never undertaken lightly, but it has been a huge blessing now for so many. For some people, the inability to have a child is a great source of sorrow but 300,000 children and their parents can now be deeply grateful for the existence of IVF and for a parliamentary system which allows this to take place safely.

One source of disquiet at the moment, as the noble Baroness, Lady Boycott, has already mentioned, is the difference between different areas. The NICE guidelines are that everyone in need of IVF should be allowed three cycles on the NHS but some regions do not now follow this, for financial reasons. Private treatment is expensive and it is clearly inequitable that people in some regions are not able to receive what others can elsewhere. I believe all regions should adhere to the NICE guidelines. I do not believe that anyone has a right to a child—children are a gift—but they have a right to try for one, and should not be precluded from doing so by cost.

The HFEA has long been a regulatory model much envied by other countries and I fully support the proposals made that we should have something equally sound and long-tested in relation to genome editing. As we have already heard, this is progressing fast in the removal of heritable characteristics from embryos and, eventually, in editing the DNA. It is not yet permitted here but, as we have heard, the Nuffield Council on Bioethics has reported that it might be permitted on a case-by-case basis if it is consistent with welfare, social justice and solidarity—and strictly regulated. The noble Baroness, Lady Deech, indicated some of the overlapping confusion that there is in this area. Clearly, we need the most serious debate in this House about germline modification and how that is to be regulated. Parliament needs to set up procedures for considering this issue in depth, and to do so soon.

As well as celebrating today the fact that so many women have been able to give birth to children as a result of the HFEA and the legal system which allows for that possibility, we can also celebrate the fact that the HFEA has for so long been well tried and tested. It provides a wonderful model for whatever eventually comes by way of regulating genome editing.