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“But there is a clear demand from people to know more about what researchers are doing and their plans for future work, highlighting a need for better communication about science and research from both the scientific community and ourselves as regulator.”
The Bill has helped to generate a public debate, but the science community has an ongoing duty to continue that communication.
I want to raise an issue that was debated in the House of Lords, which I hope will be considered further in this House. The suggestion has been made that a regulation-making power could be included in the Bill to allow sperm and egg derived respectively from a male and female stem cell—not from testes or ovaries—to be permitted sperm or permitted egg for the purpose of implanting a permitted embryo in order to treat the infertility of those individuals, such as cancer sufferers, who cannot produce their own gametes in the normal way. The science is not there yet, but there is the potential to allow thousands of cancer survivors and their partners to have a child of their own genetic material. That is remarkable science, which was undreamed of not long ago. I would welcome an indication from the Government that they have not closed their mind on that issue.
I want to deal now with the genetic testing of embryos and, first, with the question of negative selection, which involves testing IVF embryos for serious inherited diseases and selecting those that are free from disease. Some disability rights campaigners argue that it is wrong to screen out and that it is tantamount to regarding an individual with a disability as less valuable in some way. I do not share that view. It must surely be preferable to avoid babies being born with very serious disabling conditions. That seems quite different from doing everything possible to avoid any discrimination against an individual who has a disability. There is also the potential to reduce the
prospect of a termination at a later stage in pregnancy. For that reason, that negative selection seems entirely appropriate.
Secondly, I want to deal with the question of positive selection and the saviour sibling issue. By tissue-typing IVF embryos, we can identify an embryo that is a tissue match for a sick older sibling suffering from a serious disease so that the transplant of umbilical cord or bone marrow would be a more effective treatment. The original draft Bill limited screening for that purpose to circumstances in which an older sibling had a “life-threatening” disease. The Joint Committee thought that that was too narrow, and the Bill now refers to “serious” disease. That seems entirely rational. It would be hard to argue that we should help only those with a life-threatening condition, leaving those with serious conditions without hope.
I can understand the ethical concerns about saviour siblings. How does a saviour sibling cope with the knowledge that they were created for such a purpose? I do not dismiss that anxiety, but my judgment is that the benefits outweigh the concerns. Inevitably, each hon. Member must reach their own conclusion. The reference that the hon. Member for Bolton, South-East (Dr. Iddon) made to the Whitaker family was a powerful testimony to how the procedure can be enormously valuable for a family. In that case, it has led to a family being able to live happily.
Dr. Iddon: Does the hon. Gentleman accept that it is a treatment of last resort, first because it is costly and secondly because the family would look for a match transplant from elsewhere first? Indeed, as far as I am aware there have been only six cases of saviour sibling treatment in this country.
Norman Lamb: I entirely accept that point and agree with the hon. Gentleman.
Dr. Gibson: But does the hon. Gentleman agree that in many conditions it is not just a question of simple genetic screening? Many of the conditions that afflict humanity are caused by many genetic factors interacting with the environment. As we would not be able to provide that evidence, we would be able to facilitate and help only a low number of people.
Norman Lamb: I accept that point, too, and I am grateful to the hon. Gentleman for his intervention.
Patrick Hall: I think that the hon. Gentleman used the words “a child created for that purpose”, but the context would also and overwhelmingly have to be that the child were wanted anyway.
Norman Lamb: I completely agree. I was putting the anxieties of those who are concerned, but the hon. Gentleman is absolutely right about the test that should apply in such cases.
Doctors, scientists and patient groups have pursued two campaigns, co-ordinated inevitably by my hon. Friend the Member for Oxford, West and Abingdon. The first relates to giving the HFEA the power to license the use of cells from existing holdings, which are anonymous, where the donor is either dead or untraceable. The second relates to the use of cells from children, with parental consent, where a child is suffering from a terminal or progressive illness.
Those important issues secured cross-party support in the Lords and I hope that the Government will facilitate discussion of them and will take a favourable view of both. As I said, they are supported by scientists, the medical profession and patient groups.
I shall now deal with licences for therapy. The 1990 Act provided for the use of embryos specifically for research, not for therapy. The 2001 regulations permitted therapeutic cloning to provide the prospect of generating stem cell therapy for diseases such as Parkinson’s and diabetes. All those who support such research do so because of its potential to provide therapy. However, it is unclear whether research licences could lawfully permit the use of embryos for therapy if the research proved ultimately successful. It would be odd if we did not address now the potential for such research to succeed. Do we really want to return to the matter with more primary legislation? We should address it now to set up a framework to deal with the eventuality that the research will succeed in due course.
The need for a father is for many people the most emotive issue of all. It challenges many of our assumptions about families and society. I was struck by the number of single women and lesbian women who are already having IVF treatment. In 2006, 1.4 per cent. of the 40,484 IVF treatments were for single women and 0.5 per cent. were for registered lesbians—560 single women and 200 lesbian women in one year. Conservative Members argue that if that treatment is happening already, what is the point of changing the situation? However, there appears to be evidence that the need-for-a-father test is an additional hurdle that excludes some women. My hon. Friend the Member for Oxford, West and Abingdon refers to the criteria set by the NHS in its clinics. I understand that there is evidence of unequal access; if women are able to obtain treatment only in private clinics, some will inevitably be excluded.
Geraldine Smith: What evidence is the hon. Gentleman referring to?
Norman Lamb: My hon. Friend the Member for Oxford, West and Abingdon tells me that the criteria that the NHS set refer to— [Interruption.] Let me develop my argument. The Human Fertilisation and Embryology Authority code of practice rightly says that if a single or lesbian woman seeks treatment, the treatment centre should assess the prospective mother’s ability to meet the child’s needs. Given that IVF treatment is already being given to single and lesbian women, the changes proposed—the deletion of the requirement to take into account the need for a father—is not actually that dramatic
Mr. Lansley: Will the hon. Gentleman give way?
Norman Lamb: In a moment; let me just develop my argument. As for the focus on what is surely the most important issue of all—the welfare of the child who will be born—the British Medical Association put the matter rather well in its briefing:
“We have consistently rejected the idea of applying inflexible rules on access to fertility treatment, believing instead that each application should be considered on its merits. Assessments
should be made on the individual factors in each case rather than on blanket restrictions applied to certain categories of people or family arrangements.”
I could develop that further: it is perhaps not entirely accurate to say that there are “blanket restrictions”, but there are hurdles for some groups of people with particular family arrangements. Surely that is not right. Surely the test should be to consider in each case the welfare of the child that would be born.
Mr. Lansley: I have to tell the hon. Gentleman that there is no direct relationship between the text of the Bill and the criteria applied in the NHS for access to infertility treatment. We have complained many times to the Minister of State, Department of Health, the right hon. Member for Bristol, South (Dawn Primarolo), and her predecessors about the fact that arbitrary social criteria are applied. The changes in the Bill will not prevent that from happening. For example, the Bill will not stop primary care trusts from saying that a woman cannot have access to fertility treatment if her partner has children from a previous marriage, or from restricting access to such treatment for same-sex couples or single parents. It is a red herring to base arguments about the Bill on the NHS criteria.
Norman Lamb: I hear the hon. Gentleman’s point, but I disagree with him. [Interruption.] May I just develop my point? The BMA addresses the question of whether there is evidence that children born to single women or lesbian couples are disadvantaged in any way. Its submission says that there is evidence that children raised by single women are more likely to be disadvantaged, but that is not true of children born to single women or lesbian couples who choose to start a family on their own through assisted conception. The early research indicates that such children fare just as well as those born to two heterosexual parents through assisted conception.
We are always told that we should make policy on the basis of evidence. If the evidence suggests that there is no disadvantage, there should not be in-built discrimination in legislation placing an additional hurdle before some people because of what they are. We should instead look at individual circumstances. The argument is not about anybody claiming to have a right to a child; it is about individuals having the right to be considered objectively for IVF treatment. The Bill would require treatment clinics to consider the welfare of the child, including the need for supportive parenting. That seems to be the right test, and I will support it.
Let me turn to the issue of whether the birth certificate of a donor-conceived child should have that fact recorded on it. There is considerable force behind the argument that the individual has the right to know. The issue was debated at length in the other place, and one of the possibilities that was considered was the use of a symbol to indicate that a child was donor-conceived. The Government are committed to carrying out a review of the law and practice, and I would be grateful if the Minister said, in her closing speech, where we are with that process and when the review is likely to reach a conclusion.
Finally, the issue of abortion is not part of the Bill, but we shall deal with it through amendments. Inevitably, it has always been a matter of individual
conscience, and rightly so. We have heard in the past few days of a research study that shows that there appears to be no real advance in the survival rates of babies born before 24 weeks. That appears to be the scientific consensus. The Conservative spokesman, the hon. Member for South Cambridgeshire (Mr. Lansley), addressed the issue. If we are making legislation on the basis of evidence, we should not be persuaded that there is a case for changing the current 24-week limit.
In conclusion, I share the policy aim of reducing demand for abortions. We must all be concerned about the number of abortions taking place. The need to reduce the number of unwanted pregnancies highlights the importance of sex and relationship education in schools, which should be part of the minimum curriculum entitlement. That is what my party believes. It is dreadful that the United Kingdom continues to be top of the league table for teenage pregnancies, and the number of unwanted pregnancies suggests that we are failing as a society. If we can address that, we can deal with the number of abortions that take place. It must also be right that we ensure that the abortions that take place are carried out as early as possible by improving access where necessary. I agree with the comments of the Conservative spokesman in that regard.
It is not often that a Bill comes before the House that is so full of challenging moral and ethical questions. We welcome the fact that the Bill is being debated, and I repeat my hope that the debate is conducted on the basis of evidence and in a measured tone.
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Ms Dari Taylor (Stockton, South) (Lab): The Bill is required. It is almost 20 years since the 1990 Act. The Bill ensures that the regulatory framework for assisted conception is brought up to date and its purpose clarified. The Bill’s second function is to maintain public confidence. The subject of embryo research is complex and highly emotive and it is crucial that the public are kept on board.
I speak as a female who is infertile and who went through years of medical treatment, sadly, without the doctors ever discovering why I could not conceive naturally. In Britain about 20 per cent. of young women and couples go through the same experience. They want a natural conception, they hope that scientific advances will help them, but in many cases those fail. The Bill deals with a regulatory framework that is of the utmost importance.
As the chair of the all-party parliamentary infertility group, I want to put it on record that I see the Human Fertilisation and Embryology Authority as an excellent body. It is highly professional, it has a sound reputation and it is seen as authoritative. Through its actions it protects patients, monitors safety and efficiency, reassures the public who are concerned about the manipulation of embryos, and protects those working in the field. It is a highly professional organisation which commands worldwide respect.
However, I am concerned that the Government have not chosen to examine the way in which the regulations impact not just on research, which is crucial and has been the subject of much debate today, but on treatment. I have previously pressed this case and failed, but I
suggest to the House that to license “standard” IVF procedure and treatments now is excessive. I say that not because I think that there should be no inspection—of course there should. However, the Healthcare Commission could investigate, make judgments when appropriate and ensure effective service delivery. Instead, we have a system in which the Human Fertilisation and Embryology Authority and the Healthcare Commission regulate. We have been promised a lighter touch, but frankly it is not appropriate at this stage for us to continue with the HFEA’s regulation of treatments.
The licensing procedure often takes 18 months to deliver; it is highly costly and takes a very long time. Many of our clinics pay up to £70,000 a year to deliver the system to people who are diagnosed as having medical problems; those people are the one group with such problems to whom we say, “Sorry, but you have to pay for any hope of effective treatment.” I am disappointed that the situation has not changed.
My second concern is that the HFEA spends an inordinate amount of time deliberating over licences. Those are complex research licences, and nobody would deny the complexity that it tries to handle. I am really pleased that under the Bill the HFEA will be able to engage a committee of experts to help it deliver an effective licence. That is appropriate.
Dr. Gibson: My hon. Friend has talked about her disappointment about infertility treatments. Does she agree that women are sometimes overstimulated with hormones? If we cut that down to levels that did not cause the multiple damage to eggs that has now been shown, we would save the national health service millions.
Ms Taylor: My hon. Friend is absolutely correct, and of course I agree.
However, I should take my hon. Friend and the House a stage further and say that the regulatory licensing could seriously improve. This House and our Ministers should insist that the National Institute for Health and Clinical Excellence regulations be fully implemented. In 2004, we had a commitment that three full cycles of in vitro fertilisation should be available to all who fitted the clinical criteria. By 2005, it was said that each primary care trust would support at least one full cycle. At this point, a seriously small minority get three cycles, although I cannot give a percentage because I did not bring that information with me. However, the majority of people are in the middle. They hope for some treatment, but little is delivered. This is 2008, and NICE regulations are involved; frankly, it is a scandal. The women involved hope that the service could help them conceive naturally, but it is not available.
Not only that, but there is a variation between primary care trusts. I have just mentioned the number of cycles that are funded; waiting times and the eligibility criteria are also a problem. Many women become eligible at 35-plus, although everybody knows that a woman’s fertility decreases savagely at that point. However, they enter the delicate process at 35 and are given opportunities that in fact are not opportunities at all.
I wish that people shouting about every child needing a father or about the problems that they see with hybrids were as vocal and intent about ensuring
that a service was delivered to ordinary women and couples. This House promised that, but nobody seems capable of delivering it. I feel very passionate about this: I do not chair the all-party group for nothing. It is a seriously difficult situation for women and couples to handle.
I will, of course, contribute to the debate on hybrids or admixeds, but I cannot support that part of the Bill—it is a step too far, and I intend to vote against it.
On the issue of every child needing a father, I will support the Bill, because supportive parenting is an appropriate way forward. Speaking with my other hat on, which I share with the hon. Members for Canterbury (Mr. Brazier) and for Mid-Dorset and North Poole (Annette Brooke), if it is acceptable that children who are available for adoption and fostering can be adopted and fostered by single women or by homosexual couples, I see no reason why they should be excluded from accessing all that can be provided for them in terms of embryology treatment. It is completely unacceptable that it is seen as acceptable for one group but not for another. The children who are being adopted by women and homosexuals are invariably those with special needs who are unwanted by heterosexual couples. The House needs to wake up to the hypocrisy that we sometimes seem to develop among ourselves. I come from a very happy home with a brilliant father—somewhat autocratic and always passionate, especially about Welsh rugby and the Labour party, although we can forgive him on those scores. We cannot say that what we have had in our own lives is the only option available. I have known many divorced women and men who have been the most magnificent parents.
On saviour siblings, I will again support the Bill. I cannot understand why the House could not allow a child to have a healthy life by using a brother or sister to support that. I cannot believe that there is an ethical or theological problem, as I do not know whose theology does not have compassion writ large in it.
On the whole, this is a valuable, thoughtful and thought-provoking Bill. It has produced for me one of the largest postbags that I have had in a long time, consisting of intelligent contributions to the debate. I hope that following our debate we will come to the right decisions.
5.32 pm
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