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Amendments made: No. 34, page 4, leave out line 30 and insert—
‘(e) any embryo not falling within paragraphs (a) to (d) which contains both nuclear or mitochondrial DNA of a human and nuclear or mitochondrial DNA of an animal (“animal DNA”) but in which the animal DNA is not predominant.’.
No. 35, page 5, line 6, leave out ‘(d)’ and insert ‘(e)’.— [Mr. David.]
Clause 4, as amended, ordered to stand part of the Bill.
Dr. Evan Harris: I beg to move amendment No. 31, page 8, line 21, leave out subsection (1) and insert—
‘(1) Section 11 of the 1990 Act (licences for treatment, storage and research) is amended as follows—
(a) in the title, for “and research” substitute “, research and therapy”.
(b) in subsection (1)(b), for “and embryos” substitute “, embryos or human admixed embryos”; and
(c) after subsection (1)(c) add—
“(d) licences under paragraph 3B of that Schedule authorising activities for the purposes of therapy”.’.
The Temporary Chairman (Mr. Jim Hood): With this it will be convenient to discuss the following amendments:
No. 14, in schedule 2, page 54, line 22, at end insert—
‘Licences for therapy
1ZA (1) A licence under this paragraph may authorise any of the following—
(a) bringing about the creation of embryos in vitro, and
(b) keeping or using embryos, for the purposes of therapy specified in the licence
(2) No licence under this paragraph is to be granted unless the Authority is satisfied that any proposed use of embryos is necessary for the purposes of the therapy.
(3) Subject to the provisions of this Act, a licence under this paragraph may be granted subject to such conditions as may be specified in the licence.
(4) A licence under this paragraph may authorise the performance of any of the activities referred to in sub-paragraph (1), in such manner as may be so specified.
(5) A licence under this paragraph may be granted for a period not exceeding three years as may be specified in the licence.
(6) This paragraph has effect subject to paragraph 1ZB.
Purposes for which activities may be licensed under paragraph 1ZA
1ZB (1) A licence under paragraph 1ZA cannot authorise any activity unless the activity appears to the Authority—
(a) to be necessary or desirable for any of the purposes specified in sub-paragraph (2) (“the principal purposes”),
(b) to be necessary or desirable for the purpose of providing knowledge that, in the view of the Authority, may be capable of being applied for the purposes specified in sub-paragraph (2)(a) or (b), or
(c) to be necessary or desirable for such other purposes as may be specified in regulations.
(2) The principal purposes are—
(a) treatment of serious disease, or
(b) treatment of a serious medical condition.’.
No. 24, page 55, line 14, leave out from ‘a’ to ‘that’ in line 15 and insert
‘harmful gene, combination of genes, chromosome or mitochondrion’.
No. 25, page 55, line 18, leave out from ‘any’ to ‘establishing’ in line 19 and insert
‘harmful gene, combination of genes, chromosome or mitochondrion’.
No. 26, page 55, line 19, leave out second ‘abnormality’ and insert ‘genotype’.
No. 27, page 55, line 20, leave out from ‘other’ to end of line 21 and insert
‘harmful gene, combination of genes, chromosome or mitochondrion’.
No. 15, page 55, leave out lines 24 to 28 and insert—
‘(i) a gender-related physical or mental disability which is life-threatening or severely impairs their quality of life,
(ii) a gender-related serious illness which is life-threatening or severely impairs their quality of life, or
(iii) any other gender-related serious medical condition which is life-threatening or severely impairs their quality of life
No. 4, page 55, leave out lines 30 to 37.
No. 17, page 55, line 33, leave out ‘serious’.
No. 16, page 55, line 33, after ‘medical condition’, add
‘which is life-threatening or severely impairs their quality of life’.
No. 18, page 55, line 35, after ‘other’, insert ‘regenerative’.
No. 28, page 55, line 45, leave out ‘abnormality’ and insert ‘harmful genotype’.
No. 29, page 56, line 1, leave out ‘abnormality’ and insert
‘harmful gene, combination of genes, chromosomes or mitochondrion’.
No. 30, page 56, line 3, leave out ‘abnormality’ and insert ‘harmful genotype’.
No. 5, page 56, line 11, leave out subsection (4) and insert—
‘(4) In a case where a person (“the sibling”) who is the child of the persons whose gametes are used to bring about the creation of the embryo (or of either of those persons) suffers from any medical condition which could be treated by umbilical cord blood stem cells, bone marrow or other tissue of any resulting child, a licence under paragraph 1 cannot authorise embryo testing for the purposes of establishing whether the tissue of any resulting child would be compatible with that of the sibling or for embryo testing for any purposes for the subsequent medical treatment of that sibling’s medical condition.’.
No. 19, page 56, leave out lines 34 to 40.
No. 6, page 56, line 35, at end insert
‘, with the exception of sub-paragraph (4) of that paragraph.’.
No. 20, page 57, leave out lines 2 to 4.
No. 32, page 59, line 6, at end add—
‘Licences for therapy
3B (1) A licence under this paragraph may authorise any of the following—
(a) bringing about the creation of embryos in vitro, and
for the purposes of therapy specified in the licence.
(2) Subject to the provisions of this Act, a licence under this paragraph may be granted subject to such conditions as may be specified in the licence.
(3) A licence under this paragraph may authorise the performance of any of the activities referred to in sub-paragraph (1) in such a manner as may be so specified.
(4) A licence under this paragraph may be granted for such period not exceeding three years as may be specified in the licence.
(5) This paragraph has effect subject to paragraph 3C.
Purposes for which activities may be licensed under paragraph 3B
3C (1) A licence under paragraph 3B cannot authorise any activity unless the activity appears to the Authority—
(a) to be necessary or desirable for any of the purposes of developing or deriving treatments for serious disease or other serious medical conditions, or
(b) to be necessary or desirable for such other purposes as may be specified in regulations.’.
Mr. Burrowes: On a point of order, Mr. Hood. I am concerned as to whether amendment No. 31 is within the remit of the Bill, given Lord Darzi’s letter of 31 January in response to a similar amendment in the other place. He made it clear that regulatory oversight by the Human Fertilisation and Embryology Authority finishes once a stem-cell line is derived and deposited in the UK stem-cell bank. Any stem-cell lines intended for human use will need to comply with the requirements of the Human Tissue Authority and are, therefore, subject to its regulations and to the Human Tissue Act 2004. As that is not the subject of the Bill and as other amendments, not least mine dealing with the collection of umbilical cord blood, were within the remit of the Human Tissue Act and the Human Tissue Authority, I ask the judgment of the Chair as to whether the amendment is in any way relevant, given that it is not within the remit of the Bill.
The Temporary Chairman: I cannot accept the hon. Gentleman’s point of order, as the amendment would not have been on the amendment paper had it not been in order. It was selected by the Chairman of Ways and Means.
7.15 pm
Dr. Harris: Amendment No. 31 is important, but I take this opportunity to speak to the other group of amendments in my name, and to deal with the issue of saviour siblings, which is clearly one that will dominate the debate.
Embryo selection can be negative or positive. Negative embryo selection, which has been lawful under the Human Fertilisation and Embryology Act 1990, means that if a family suffers from an inheritable disease, they are able—even if otherwise fertile—to have in vitro fertilisation. If it is successful, embryos can be gathered and tested at an early stage, while outside the woman, by the removal of one cell. That has not been found to damage the embryo and the testing of the cell enables clinicians to identify whether each embryo is affected by the condition. If an embryo is affected, the couple undergoing treatment can avoid selecting that embryo for implantation and use one of the unaffected embryos.
Since 1990, the HFEA has licensed such negative selection on a number of occasions and families have benefited by avoiding inheritable disease, particularly when they already have a child significantly affected by the disease. That is a reasonable thing to do and I absolutely reject the suggestion that helping a family to avoid having a child with a serious disease is in any way discriminatory against the disabled. There is a complete difference between seeking to alleviate or avoid suffering by such techniques and discriminating against disabled or sick human beings after they are born. Indeed, many of the doctors who work so hard to provide pre-implantation genetic diagnosis also work hard both to provide in utero surgery to avoid or ameliorate congenital defects and to look after children born with serious diseases. Although I realise that views on the issue run strongly, I hope that the allegation of discrimination is not levelled against clinicians, parents and those of us who think that PGD is legitimate to help people to avoid having a child with a forecast serious genetic disorder. Such an allegation borders on the offensive.
My second point is that when taking a cell to check whether a child is affected by a disease it is also possible to carry out other tests on the cell—for example, tissue typing. I shall briefly describe two cases. The first involves the Hashmi family whose child was very sick with thallassemia and needed a transplant, but none was available from the bone marrow or cord banks, as is often the case for families with certain genotypes—particularly, but not exclusively, those from ethnic minorities. The Hashmis needed to check whether their next child would have the same disease, and whether they could select an embryo who did not have it. They also wanted to see whether they could get a tissue match. The HFEA said, after serious consideration, that that was a legitimate thing to do, and the courts upheld that decision as lawful under the 1990 Act. I understand that the Hashmis were unfortunately not successful in conceiving.
The next case that came along was that of the Whitakers, a family from Oxfordshire. They had a child who was seriously ill with Diamond Blackfan anaemia, who was kept alive by weekly transfusions and nightly treatments of an infusion of a drug. It was not an inherited disease but a sporadic mutation, so when they had another child—they wanted to have another child anyway—they did not need to test the embryo for the genetic disease, but they did wish to use a tissue-typing technique. They were fertile but they wanted to have IVF so that they could select an embryo that was a
tissue match, in order that a wanted, loved child could provide a cord blood transplant for the afflicted older sibling.
The family were denied that opportunity by the HFEA, which disagreed with its own ethics committee. It later changed its mind, but in the interim the Whitakers went to Chicago for the treatment. It was successful, and they had another child, who was healthy. That child’s cord blood was used in a transplant for the older sibling. The procedure was successful, and the sibling was cured. As a result of the intervention, instead of neither of the two children being alive and healthy, they were both alive and healthy. That makes the case more eloquently than any speech or policy document could.
What are the problems? Well, I do not think that there are any. I do not accept the allegation that there will be a burden on the saviour sibling. There is no evidence of that. There is evidence that if the intervention does not take place the sibling will suffer bereavement, because the young child will be born into a family who have a seriously diseased child who may die. It would be a benefit if that could be avoided. As I said on Second Reading, even if we could forecast circumstances in which there would be a burden, those potential circumstances have to be balanced against the certainty of harm if the family is not allowed to have a second child in the way that I have described.
We do not know whether the removal of a cell creates long-term harm to the embryo; it is fair to say that the technology is relatively new. However we do know that so far—thousands of children have been born following pre-implantation genetic diagnosis—there does not appear to be any harm, although it is important to keep observing. We do know that the birth of many sick children has been avoided, and healthy ones have been born instead, and that a handful of saviour siblings have been permitted. The HFEA has made it clear that it will not allow the procedure if there is an alternative that does not involve the destruction of embryos, so if there is a bone marrow match or a cord blood match, it is likely that that will be pursued first, because such a transplant is clearly less onerous for the parents than IVF, which is burdensome, and pregnancy.
Dr. Gibson: Is it true, though, that many ailments and afflictions are multi-factorial, and that in those cases one could not easily find a single-gene disorder by carrying out PGD? In many cases, 50 or 60 genes are involved. What is the hon. Gentleman’s view about those situations and the children with those afflictions?
Dr. Harris: 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 that in that case, 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.
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