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Human Fertilisation and Embryology Bill [HL]
Further consideration of amendments on Report resumed on Clause 14.
The Deputy Chairman of Committees (Lord Brougham and Vaux): My Lords, there was a discrepancy in the Division on Amendment No. 108A. The number voting not-content was 164, not 165 as announced.
Lord Jenkin of Roding moved Amendment No. 111:
“( ) In subsection (5) after the words “as a result of treatment” insert the words “including, in the case of a woman proposed to be treated with donated gametes or embryos, the need for that child to be told about his or her origins”.”
The noble Lord said: My Lords, I hope that this will be rather less controversial than the last amendment we considered about the need for a father, or the alternative words. We are addressing here the question of donor-conceived people.
There is widespread agreement—it was apparent in the Select Committee and in Committee in this House—that it is highly desirable that a donor-conceived person be told of his or her biological origins at the earliest stage at which they can be expected to understand the situation. We spelled this
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In Committee, we canvassed the number of problems facing donor-conceived children, of which without any doubt the most serious is when they discover, perhaps at a late age, that their social father is not their biological father. We had some poignant evidence in Committee from people who had found themselves in that position. I should add that this amendment is not concerned with the question of putting information on birth certificates. I have tabled another amendment, Amendment No. 146—I am not sure we shall reach it today, so we will deal with that later.
Amendment No. 111 seeks to include in Section 13(5) of the 1990 Act, among the conditions of licences for treatment, the words,
- “including, in the case of a woman proposed to be treated with donated gametes or embryos, the need for that child to be told about his or her origins”.
My aim is to put this in the Bill. It is regarded by all the witnesses we saw in the Joint Committee and by many people who took part in the earlier stages of the Bill as being so important that it has to be drawn to the attention of prospective parents who are considering having treatment with donated gametes. I entirely accept the importance of counselling—and there are other amendments in this group about counselling—but it cannot be anywhere more important than in the field of a putative donor conception. The amendment would ensure that this was written into the terms of the licence and it would therefore be bound to be at the forefront of the authority’s and clinicians’ minds.
Also in this group is Amendment No. 130, which provides what I might call an additional safeguard by requiring that the guidance is in the code of practice maintained by the authority under Section 25 of the 1990 Act. Therefore, I am looking at taking a two-pronged approach to this matter: first, that the guidance should be in the Bill and, secondly, that it should be in the code.
I shall certainly want to listen to the arguments on the other amendments in this group and at the end perhaps I shall be able to draw a conclusion as to whether I really need to press Amendment No. 111. However, that it is important I have absolutely no doubt at all, and I hope that the whole House will agree with that. The question is: how do we deal with it? Do we write it into the Bill or put it into the code or, as I should like, both? I beg to move.
Baroness Warnock: My Lords, I strongly agree with the amendment but I am not absolutely convinced that the wording needs to go into the Bill. However, it seems to me that it must go into the code because, if we are serious about the welfare or the good of the child being the most important consideration in offering treatment to women or couples who want it, we must try to ensure that children are not brought up under a misconception about their genetic parenthood. That is one of the most obvious cases of immoral treatment
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Nearly all people who adopt children nowadays tell their children at a very early stage that they are adopted. I think that we should take on that model for the treatment of children born by donation and not concentrate on confidentiality or the wishes of the parents. In this case, it is very important to assert as strongly as possible that the child’s interests come first. There is no doubt whatever about the damage that can be done to children either if they accidentally find out that their social father is not their biological father or if circumstances arise where they have to be told. They may take it very hard, whereas they can—with difficulty, I agree, because it is a difficult subject to explain to a child—be brought up in the knowledge that their biological father is not their social father. Therefore, I strongly support the amendment, even if in the end the advice appears not in the Bill but only in the code, although I should prefer to have both.
Lord Neill of Bladen: My Lords, perhaps I may comment on what the noble Baroness, Lady Warnock, has just said regarding whether something should be in the Bill or in the guidance. I suppose I am influenced by the fact that I am a lawyer and therefore my primary source of authority is the enactment of Parliament. For me, it would be very important to include these words in the Bill so that everyone could walk into a public library, ask to see the Act and see it stated as a very clear principle. It depends how one regards it but I see it as a highly important principle. I should not be at all against repeating it in the guidance, but it should be in the Bill.
The Lord Bishop of Winchester: My Lords, I warmly support the noble Lord. If I am able to be here at the next round of this Report stage, I shall also support him and the noble Baroness, Lady Deech, on the question of birth certificates.
I particularly want to speak at this point because I have been very moved by some material that I, and perhaps other noble Lords, have received. It is the kind of material that the noble Lord spoke about as having seen in the committee. A young man wrote to me asking whether I wanted him to send me a paper of his, and I said, “If you would like to do so, please do”. I received four or five very striking pages from somebody who is part of an organisation called the International Donor Offspring Alliance. He is a postgraduate student in Cambridge. The story he tells is of being brought up by what he calls his “raising parents”, for whom he is full of respect. But now in his mid-20s, he feels that he has been dogged by his ignorance of his father. He has tried website after website, but has not succeeded in finding him, and has ended up exhibiting himself, as it were, on a website in case his father sees his picture and recognises himself in him. He describes growing up not knowing whether he is like his father, and not knowing his real grandparents, nor they him.
There are lots of such stories. I shall not go on, but they underline the great importance of the noble Lord’s amendment, and the importance of clarity on the birth certificate so that someone is not only told
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Baroness Finlay of Llandaff: My Lords, I shall speak to Amendment No. 129, which is in this group. All the amendments have the fundamental principle behind them of being open and honest with the child. There is nothing more devastating for children than to discover that their parents have lied to them. The difficulty is that parents do not know how to begin the conversation. In a well meaning way, they think that if they put it off until the child is more mature and can cope, somehow that will be better, but the converse is true. There is good evidence that if you start communicating with children before they develop speech and language, and they know either that they are adopted or that there is something in their background—donor conceived, or whatever, or that there is some family secret—they grow up with it. It is normal to them; it is internalised and they are okay. When they are brought up believing that the world consists of one construct and then somebody says that they have something to tell them, all of those foundations of their lives are taken away.
It is that principle behind the amendment, which stands in the names of the noble Earl, Lord Howe, myself, and the noble Baroness, Lady Barker. It is essential to reinforce the principle of honesty in all that we do, particularly when medical technology is used to intervene in what could be called processes of nature. I am worried that if we do not have something on the face of the Bill, it could slip in priority in clinical services, which are somewhat hard-pressed. There is merit in having a requirement in the Bill that people need to know how to give information. The government amendment in the name of the noble Lord, Lord Darzi of Denham, does that. I realise that it has been drafted in that way. I hope, therefore, that the guidance that goes with the amendment will really stress the need for parents to be given the skills, tools and guidance so that they can update how to give information as the child grows up. It should not be one-off information at the time they attend the clinic, but they should be able to access age-specific and age-relevant information, which will match the child’s development, so that some of the traumas of which we have heard can be avoided in future.
Lord Alton of Liverpool: My Lords, I, too, support the amendment in the name of the noble Lord, Lord Jenkin of Roding. It is a thoughtful and constructive attempt to resolve an issue, which many of us have grappled with, in Committee and outside it, with the Minister. My noble friend Lady Warnock put it well—she did so in Committee as well—when she said that we should never try to conceal from someone the truth of their identity. Indeed, it is a less loving thing to conceal identity. If eventually, through DNA testing or in other ways, someone discovers that they have been lied to, that stores many more problems further up the track.
In Committee, the noble Lord, Lord Jenkin, quite rightly raised the danger of issues such as consanguinity and incest. I shared with the House the true story of
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Alastair Bissett-Johnson, Emeritus Professor of Law at Dundee University, has given me permission to use his name and has had 43 years of teaching family law. He told me how a young person came into local authority care, with parental rights being vested in the local authority. One such parental right was that of consent to the marriage of a person in their care between 16 and 18 years of age. The social worker involved saw that one of the young people was adopted, noticed a striking similarity and discovered that the proposed spouse had also been adopted. Further investigation revealed that they were siblings. No consent to the marriage took place and the couple were informed of the circumstances. How much better it would have been if all concerned had known of their biological relationship from the outset.
I have also received several heart-breaking letters from people who were denied knowledge of their antecedents with shocking consequences for their health. One lady who is being treated for ovarian cancer and who knows nothing of her genetic history told me that she feels it scandalous that she has no family medical records. She pleads for the medical records of biological parents to be kept on a central database. Someone else wrote to say:
“Approximately five years ago, I was diagnosed with ADPKD—autosomal dominant polycystic kidney disease. This disease is genetically inherited. By having knowledge of my family history and perhaps interacting with my relatives, we may be able to help each other out and increase our lifespans. Additionally, this information may help my children and future generations”.
I have also received a letter about a case from a Member of another place, Mr John Hemming MP. He says:
“I am fearful that in this individual case, and many others besides, proper medical treatment is not possible, and preventative care is being overlooked”.
Clearly, this leaves many children at significant risk.
With many children now conceived by in vitro fertilisation, those issues have been magnified. Every child, whether born naturally or by IVF, should have a true record of their identity. One only needs to look at websites such as the donor sibling registry to see why this matters. That database enables parents to make contact with the anonymous donors who supplied half of the genes of their offspring. Children can search for their unknown genetic parents, and families can make contact with genetic half-siblings with a donor in common. Thousands of people have registered on that site looking for sperm donors, parents and for the children they helped to conceive. That is done by batch numbers, and the site states that the largest match so far has been between 26 half-siblings to a single donor, who is also listed.
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One man, a Californian artist, identified by batch 401, is father to 25 babies by 18 different women. In the United States, one donor, who had been providing sperm for over 15 years, estimated that he could have fathered 432 children.
Lord Jenkin of Roding: My Lords, I am grateful for the noble Lord’s support, yet the noble and right reverend Lord, Lord Harries of Pentregarth, told us in Committee that the rule of the HFEA is that no man shall ever be allowed to be a donor for more than 10 children.
Lord Alton of Liverpool: My Lords, I was just coming to that point. I am grateful to the noble Lord because it is relevant. I am glad that we do not permit so many babies to be born, as happens in the United States. Yet the noble Lord will see from the front page of yesterday’s Sunday Times that a young woman has become the record surrogate, having herself had eight babies under the procedure. The noble Lord is right that the HFEA says that a maximum of 10 may be permitted in Britain, but that is a significant number of siblings, half-siblings and cousins. When the Minister comes to reply, perhaps he can tell us whether the number 10 refers to successful treatment cycles or to children. Given that the HFEA states that one in four IVF births is multiple, that is highly germane.
Since sperm donations would probably be at the same IVF clinic, or at least in the same city, and possibly all within a year or so—for example, in the case of a student at a university—there may well be a good chance that children born from those donations will grow up in the same city at around the same time, some of them possibly going to the same school or even being in the same year group. Without absolute knowledge of your genetic profile, the possibility of unwitting consanguineous or incestuous relationships is obvious.
Three years ago, I pressed the Government to give children the right to know the identity of their biological parents. The donor anonymity that previously existed was lifted. I was grateful to the Government for that but, as the noble Earl, Lord Howe, said in Committee, that tells only half the story. We gave the right to inquire, but created no duty to tell. The United Nations Convention on the Rights of the Child puts it well, stating that we must ensure that every child can preserve his or her identity.
Let me conclude by citing one other person, who wrote to me to say:
“There is more to identity too. A sense of identity is of crucial importance to a balanced wellbeing. I know, since I’ve only gained one in my 39th year, and it’s changed my life profoundly. There was a sudden and profound seismic shift in my psyche. I became ‘connected’. To spend your life not knowing who your mother and father were is a torture only those that have experienced it can fully understand”.
The amendment does not go as far as I—and others—would have liked to have gone. There was a thoughtful amendment from the noble Baroness, Lady Barker, that we considered in Committee about in some way marking birth certificates. There have been amendments from the noble Earl, Lord Howe. At this stage in this discussion, I think that the amendment and the way
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Baroness Howarth of Breckland: My Lords, I should like to say just three sentences in support of the noble Lord, Lord Jenkin of Roding. If you are an adoptive parent and are being assessed, part of your assessment will involve how you will tell the child about its background. It seems extraordinary to me that we do not have exactly the same process for this group of children. We are saying that those children do not matter. In the Every Child Matters agenda, I hope that the Government will ensure that that group of children matter just as much as all the other groups. They are now the only group left out from having the right to the knowledge of their genetic inheritance.
I am grateful that children will now have the right to know their parental identity. They also need to know their genetic identity.
Baroness Butler-Sloss: My Lords, I support the amendment and, looking at the time, will make two short points. First, not only should the child be told, the child should be told as soon as possible. That is crucial. It is therefore very important, as the noble Baroness, Lady Howarth, said, that there should be good counselling and good information given to parents of children in that situation as to how to tell the child. On the second point, I very respectfully agree with what the noble Lord, Lord Neill of Bladen, said: it should be written into the Bill, so that people will know openly. They will not necessarily see the code, but they will see the Bill.
9.45 pm
Lord Patten: My Lords, I entirely follow the lead of the noble Lord, Lord Alton, in his support for the amendment moved by my noble friend Lord Jenkin of Roding. He is on to a very important point, which concerns basic human rights and takes us back to the point made about human rights in an earlier debate in your Lordships’ House by the most reverend Primate the Archbishop of York. Denying children the right to know their natural father is wrong, if I can use such a fierce word. The absence of knowledge of the natural origins of a person's life can have profound consequences on an individual's emotional, social and spiritual development—here I use “spiritual” in its broadest sense, not just religious.
The denial of any knowledge of a person's origin can have potentially devastating consequences for that individual, as some of your Lordships have pointed out in this short debate. Knowing one’s own genealogy is a human right, and a very important one. Most people recognise that what we think of as a sense of place is very comforting. It is where they identify with. A sense of who you are and where you come from is very much more than just comforting; it is essential.
I say to the Minister that it is totally wrong for the state to connive in a falsehood—and I know he does not wish to do so. Birth certificates must record the birth as far as it is possible. They must never encourage a deliberate falsehood by making provision for the registration of parents in a way not clear to
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Surely the Government cannot wish their own newly established body, the Statistics Board, which takes up its role on 1 April under the immensely distinguished chairmanship of Sir Michael Scholar—it is already in operation according to Parliamentary Answers—to connive in any falsehood. We are told by the Prime Minister that the new Statistics Board is there, quite rightly, to ensure the purity and high quality of our statistics. I am sure that there is not scintilla of difference among anyone in this House: we want high-quality statistics. The board cannot begin its new role in April by being asked to connive in something which is, on the face of it, a falsehood if full details are not recorded in birth certificates. Has the new Statistics Board been consulted, or will it be consulted on that critically important issue—a genealogical, historical and medical issue—for those whose records it is considering? I hope that the Minister will tell us, in answer to this debate, that it is not being asked to connive in a deliberate falsehood.
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