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Human Fertilisation and Embryology Bill [HL]

I had not intended to speak in support of the amendment because it seemed self-evident that it was a valuable amendment that the Government should consider. I say, in all seriousness and absolutely sincerely, that it is extremely helpful that the noble Lord, Lord Alton, continues to make objections; it helps us to focus our minds on what is ethical and what is useful. I thank him for his points, but I do disagree with him. Pretty well all of us in this House who have at some time or other had unprotected intercourse will have made embryos that did not become babies; it seems that most human embryos do not. Let us not forget that most embryos do not implant. I return to the points made by the noble Lord, Lord Patel. We must understand that genetic disease is a very serious issue indeed. There are about 6,000 single gene defects—that is what we are talking about—and most of them are so-called recessive defects, which means that if the parents both carry the gene, usually unwittingly, their children have a chance of having the defect. Such diseases are, frankly, untreatable. A few of them—a handful—do not cause very serious problems but, mostly, if you have a genetic disease, you live with it, you suffer from it and you die from it; and you die from it, normally, while you are still a child. Most children with genetic diseases do not survive into adulthood or even into teenage years, the exceptions perhaps being muscular dystrophy and cystic fibrosis and a few others. Most of them are so serious that children die after appalling suffering. The only effective treatment that we think is on the horizon for genetic disease is gene therapy. Basically, gene therapy involves getting the correct gene construct—the correct DNA—into the person so that their tissues start to express, or make, the proteins that are necessary for normal health. With cystic fibrosis, a protein is made without which breathing, digestion and other things would become impaired, and the children would die, usually in an emaciated state, with very severe breathlessness. One of my friends, sadly, is in that situation at the moment, and it is pretty unpleasant to watch her, as a young adult—she survived that long; she was lucky. Gene therapy normally involves piggybacking a gene into the cell so that you can modify the genetics with which the person has been born. That is normally done with a virus; various viruses have been tried. In my own laboratory, we use what are called retroviruses for such experiments, and we do so only on animals. They are similar viruses to those that infect people during infection with HIV. You can see the potential risks that such therapy has. Other viruses have been tried, particularly, for example, adenoviruses but, to date, gene therapy, in nearly all cases, has been an extremely serious undertaking. In America, there have been deaths after gene therapy and, so far, it has not been satisfactory. It currently carries—because we do not understand how to get the genes into the nucleus—a risk of cancer, a risk of an immune reaction and, in some cases, death within a few days of treatment. There is a real need—let us not underestimate this—to get genes into tissues that are damaged. At present, most gene therapy, quite understandably and probably quite ethically properly, is reserved only for people who are already so seriously sick that there is no alternative—by which time, in the case of cystic fibrosis, their organs are really badly damaged; they can hardly breathe and are virtually at life’s end. If we could get the genes in earlier, we could prevent both that scarring and that terminal disease. Therefore, the need to try and treat children young—early on, while the disease is still making its way and not with its full ravages—is extremely important. With all due respect to the noble Lord, Lord Alton, there are many examples in medicine where parents or guardians quite properly take it upon themselves to make consent for medical research on children that involves the potential to improve the health of their children or of others. That is firmly established within paediatrics, and while that area is at the moment under considerable scrutiny there is no doubt that that aspect of paediatric research is considered completely proper. There is no question among most medical opinion—and, I suspect, most public opinion—that it is appropriate to do that. Consent given by someone legally entitled to do so on behalf of the child must be an appropriate way to conduct such research, particularly where there seems to be a real therapeutic possibility. The great advantage in having an embryo is not to have an organism to treat but to grow tissues from it that might be treated. For example, when using the modern techniques that we hope to be able to implement in this country, if an embryo had cystic fibrosis then pancreatic or lung tissue would specifically be grown. If we could do that, we could start to have a clear understanding of the ravages of these diseases and how they might be stopped. We can never prevent genetic disease. Each of us in this Chamber—each of your Lordships—has a defective gene somewhere in our genome. In most cases, however, your Lordships are fortunate not to have married or have had sex with someone who has a similar defect in their genome and, therefore, your children are not at risk. That is a matter of random chance, and, if we can prevent these diseases or improve our understanding of them, it is a moral imperative to do so.