It is most likely that the procedure will be possible only in a handful of cases, so we are not talking about widespread tissue-typing of a lot of embryos. Of course, many parents will choose not to have IVF and will instead take their chances, which are one in four.
Clear evidence has been presented to me that a tissue-matched transplant from a relative is more likely to be successful—at least in the case of diamond blackfan anaemia, from which the Whitaker child suffered—than a tissue-matched transplant from someone who is unrelated. We all support the idea of a bone marrow bank and umbilical cord blood banks, but they will never be a complete replacement. However, if those banks expand, there will be less need for procedures of the kind that we are discussing. I do not think that we need to have the discussion that I fear we will have about the merits of umbilical cord blood banking and bone marrow banking, such as that provided by the estimable Anthony Nolan Trust. The measure is self-limiting; if cord blood and bone marrow transplants work, the procedure will not be done. The measure relates to the few circumstances in which the procedure will still be required.
As far as my party is concerned, there is to be a free vote on the issue. I know that some of my hon. Friends do not share my view, but I think that the procedure should take place. We are not talking about eugenics. Eugenics is a state-sponsored scheme of building in genetic advantages, or excluding certain genetic conditions. The procedure is not state-sponsored at all. It is for doctors and patients to agree to the procedure together, under informed consent, and then apply to the regulator for permission. It is not eugenics, and it is offensive to suggest that it is.
I should like to move on to the other significant amendments in the group. First, I want to talk about the amendments in my name concerning the use of the term ““abnormality”” in the Bill. That wording causes a problem. It allows genetic testing for a genetic abnormality. There are some characteristics that, together, might cause serious diseases or life-threatening disease—or whatever the threshold happens to be—but that cannot properly be called abnormalities. I have had a briefing from leading geneticists, including Marcus Pembury, that says that if the Government do not make this minor amendment, they may find themselves fighting a High Court case in which opponents of PGD will say, ““This particular combination of normal genes, which causes a serious disease in this individual, is not an abnormality, so how can you say that you're testing for an abnormality, according to the terms of the Bill, when the problem is caused simply by a combination of normal components?””
The best comparison is with rhesus disease. Carrying certain rhesus factors—positive or negative—can cause serious disease in a second child, but the rhesus factor is not an abnormality; it just so happens in that some cases, it is bad news for a child. I therefore urge the Government to consider the alternative form of words that I have suggested, which includes reference to a ““harmful gene”” or ““combination of genes””, because that is what we are talking about. In the other House, it was suggested that the phrase ““genetic characteristic”” be used—that is, a genetic characteristic that caused serious disease, not a genetic characteristic that was being screened for; we have to be clear about that. Either of those wordings would solve the problem, and I should be interested to know whether the Minister of State, Department of Health, the right hon. Member for Bristol, South (Dawn Primarolo) can be certain that her form of words will not be challenged.
Finally, I turn to amendment No. 31. It is linked with amendment No. 32, which would amend schedule 2. Amendment No. 32 is the key one; it is very important, but I do not have time to give it its due. It would insert a new provision that would enable the HFEA to give a licence for therapy as well as for research. The problem with the current Bill is that if, one day, the research works, and it is possible to derive from embryos stem cells that could be used to treat, say, diabetics by providing new, insulin-producing cells, or Parkinson's disease, it is not clear whether it would be possible to create embryos and use or store them for the purpose of therapy. Clearly, clinical trials are covered by the term ““research””, so it will be possible to create, store and use an embryo to provide stem cells for use in clinical trials. One cannot keep doing clinical trials once a treatment is known to work; it is unethical to randomise someone to placebo and someone else to a treatment that is known to be effective. At that point, one has to stop trialling, and instead deliver treatment. At that point, it is not clear whether the original embryo, from which the new stem cells are derived, will be covered, under the HFEA, by a licence, because one can get a licence only for treating infertility or for research.
The Government are right to say that the stem-cell therapies will be controlled by the Medicines and Healthcare products Regulatory Agency and, before that, by the Human Tissue Authority. That is not in doubt, and I am sure that the joint statement from those bodies and the HFEA will lead to a seamless transfer. The problem is that if, once research trials work, a company called, say, Stem Cells R Us comes along and says, ““We can produce embryonic stem cells for treatment and sell them to the NHS as therapy””, it will not get a licence under the Bill, because it cannot show what the research ends are. It is not good enough for the Government to say that there will always be quality assurance testing on any stem cells derived and that that counts as research. Quality assurance is not research. Research must pass muster on clinical research ethics, and a clear programme of research with inclusion criteria and exclusion criteria is therefore required.
The Government gave two different answers when the issue was raised in the Lords—I can send the Minister the exact quotes. That makes their position difficult—if their position is that there is no problem—because if there were a challenge in court, it would be found that Ministers in the Lords said diametrically opposed things in Committee and on Report. In Committee, the Minister said that such a provision would be a step too far, because it would raise a series of issues about, for example, how many embryos per stem cell line are needed for therapy. On Report, the Government changed their mind, when the Minister said that such a provision would be unnecessary, because the practice is already permitted under the 1990 Act. The Government stuck to that line in the letter that was referred to in the point of order raised by the hon. Member for Enfield, Southgate (Mr. Burrowes) and on Third Reading.
That will not do. It is necessary to clarify the situation, which would not be a step too far. Indeed, Baroness Warnock expressed concern in Committee that despite everything we went through on cloning regulations, which related to conducting stem-cell research and providing therapies, the Government say that they would permit research but would not permit the fruits of that research—the therapies themselves—to be used.
Lord Patel and I worked on the amendment that has since been tabled by the hon. Member for Boston and Skegness (Mark Simmonds), but my amendment No. 32 is better than that, which is why I have re-submitted it—the two amendments do the same thing. I do not intend to divide the Committee, but whatever the Minister says in reply, will she meet me, scientists and stem-cell research funders, who are concerned, along with her officials to explain precisely why—I fear that she will not have time today—my amendment is unnecessary?
Human Fertilisation and Embryology Bill [Lords]
Proceeding contribution from
Evan Harris
(Liberal Democrat)
in the House of Commons on Monday, 19 May 2008.
It occurred during Debate on bills
and
Committee of the Whole House (HC) on Human Fertilisation and Embryology Bill [Lords].
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2007-08
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