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Human Fertilisation and Embryology Bill [HL]

My Lords, I feel rather happier with this amendment than I did with that of the noble and learned Lord, Lord Lloyd. There are a couple of things I that would like to say, which are, I think, highly relevant. I do not entirely agree with the noble Baroness, Lady Finlay, about one issue. I do not believe that medical practice and research are progressing so quickly that we cannot establish basic ethical rules about how we manage things in law and regulation. Things are not moving that quickly. It is very obvious in the case of pre-implantation. After all, as I mentioned the other day, the first child is now coming up for 18. It is quite a long time, in which only a handful of diseases have been regulated and passed through the guidelines of the HFEA, which brings me to my second point. It is not entirely desirable to have every disease process regulated in quite the way that the noble Earl, Lord Howe, suggests for one very good reason. There is a much greater expert on muscular dystrophy than myself in this House: the noble Lord, Lord Walton. The defect in the dystrophin gene is found in somewhere between 2.25 million to 2.5 million letters of the DNA alphabet. There are at least 400 or 500 different misspellings that can cause a form of muscular dystrophy, and those different muscular dystrophies will have different prognoses. Some will lead to relatively minor weakness, with a good chance of longevity. Others are totally devastating. Lesch-Nyhan syndrome is a much rarer disease, which affects only boys. No single family in the United Kingdom has precisely the same mutation as another; everybody has a slightly different mutation. The manifestations of that disease can be absolutely devastating. These children may frequently expose themselves to damage. They mutilate themselves; they bite their tongues off; they often have to have their teeth extracted to prevent that happening, in case they die of the infection. It is the most brutally revolting disease, which I will not describe in detail because it really is that unpleasant. Even with cystic fibrosis—perhaps the most common disease that is a recessive disorder—the nature of the mutation makes a very big difference to the quality of life afterwards. Therefore, the idea that permission should be given in each case is not terribly useful. There has to be a degree of latitude in how this is done and, in many ways, the proposition in the amendment of the noble Earl, Lord Howe, fits the bill beautifully. In some mutations one might say that screening is not suitable but in others it clearly is.