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Clause 24 [Register of information]:
Earl Howe: moved Amendment No. 131:
(a) an individual as defined in section 31, or(b) where no request under subsection (2) has previously been made, a child of such an individual; ”28 Jan 2008 : Column 453
The noble Earl said: My Lords, I return to an issue I raised in Committee about the right that the Bill grants to a donor-conceived person to make a request to the registrar for identifiable and non-identifiable information about his or her donor parent. This right is entirely appropriate and worthy of our support. In Committee, I raised the question of whether this right should be extended to a child of a donor-conceived person in certain circumstances. There could be a situation in which a woman with children of her own discovers that she was donor-conceived, but dies before she has the chance to make an information request. In those circumstances, there would appear to be no means for anyone at all to obtain the relevant information from the authority.
I maintain that the child of a donor-conceived person has a very strong claim to that same information, not simply to satisfy his curiosity but to enable him to discover any information about heritable illness, about which his dead parent would have had a right to know. He also has a direct interest in wanting to avoid entering into an intimate relationship with a close blood relation. I have reworded my Committee amendments so as, I hope, to avoid the unwelcome possibility flagged up by the Minister that it could give rise to a request for information from all the children of a donor-conceived person, as opposed to just one of them; my intention being that the right to make an inquiry should be extended only once, either to the donor-conceived person or to a child of his.
I believe that the Bill as currently drafted is unnecessarily restrictive and I hope that the Minister will look at the amendment more favourably than she did before. I beg to move.
Lord Elton: My Lords, my noble friend’s scenario suggests that such things happen at a great pace and science also moves at an even greater pace. There may be occasions when it is extremely important for the future welfare of the child of the donor to know who the donor is in order to know whether some sort of preventive medicine or other necessary course is taken. I hope that the Government will listen carefully to the proposal.
Lord Alton of Liverpool: My Lords, I rise briefly to support the amendment. The noble Earl has put a very good case to the House. It builds on a case he made in Committee and that we have discussed in various contexts since then. I suspect that overwhelmingly we would all agree that where genetic issues and illness may be involved, it must be right that people have access to that information. Increasingly, with DNA testing becoming routine, these things will come to the surface. Therefore, I think that the cause of truth is served by this being done as early as possible and that we will have to move away from the right to know to the duty to tell—a matter we discussed at earlier stages. Even though we have not been able to find a comprehensive solution to this problem—let us hope that when they debate it in another place they will discuss some of the issues we have looked at and perhaps will think further on the question—as a discrete question, this is a good one for the noble Earl to have brought to the House. Certainly it has my support.
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Lord Walton of Detchant: My Lords, I, too, wish to support the amendment very warmly for the reasons so lucidly put forward by the noble Earl, Lord Howe. It is an important amendment for exactly the reasons he gave. I hope that the Government will be able to support it.
Lord Patten: My Lords, I will not go through the arguments so fluently advanced by my noble friend on the Front Bench and by my noble friend Lord Elton. I shall simply add a footnote. Just as I think it is very important for a child in such a circumstance to have a sense of place and knowing where they belong, it is even more important for them to know not just for genetic reasons but for genealogical reasons where they come from. That is why I support this amendment.
Baroness Royall of Blaisdon: My Lords, the Bill allows for donor-conceived people to contact the HFEA on reaching the age of 16 to find out non-identifying information about their donor. Access to non-identifying information at age 16 is a new provision. The Bill also re-enacts existing provisions that allow an 18 year-old donor-conceived person to retrieve identifying information about their donor following the removal of donor anonymity in 2005.
The amendment seeks to enable the children of donor-conceived people to contact the HFEA to obtain information from the register regarding their parent’s donor, in the situation where the parent did not contact the HFEA themselves. We recognise that this information is likely to be of interest to the children of donor-conceived people if the donor-conceived person themselves has not accessed it. It would be a piece of information about the child’s genetic history, one step removed.
However, the purpose of allowing donor-conceived people access to information about their donor is to fill a gap in the knowledge they have about themselves. Many donor-conceived people feel that they are missing important information about who they are and where they came from because one set of genetic information is missing. Information, including identifying information, about the donor is intended to help address that. For that reason provisions are made to allow such people to find out about their donor, and donors sign up to donate on the understanding that such information will be made available. The Government believe that this sense of a gap would not apply in the same way for the children of donor-conceived people. Though they would have an interest in their genetic grandparent, they would not have the same sense of a gap in their knowledge about where they came from. They would know who their parents are.
We also have to consider the donor-conceived person themselves. The amendment would enable their children to request information about the donor while they themselves are still alive. What impact would this have on the family? How will the donor-conceived person feel if they themselves have made a decision not to ask for information and their child takes a different view? We need to consider all the interests and balance them. Since the removal of donor anonymity in 2005, donor-conceived children are able to get identifying information about their donor from the HFEA register.
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All those arguments still stand but I heard the persuasive argument put forward by the noble Earl about the children of donor-conceived adults who may have died. While the Government have considered this issue carefully and reached the conclusion that access to the HFEA register should continue to focus on those directly affected and that it should be a matter for personal decision by the donor-conceived person whether to access the information available, I am persuaded to take this back and look at the issue of the children of donor-conceived adults who have died. That is a particular case. I do not know what, if any, movement there might be on this, but I am willing to take it back. We have one week before Third Reading, so I am certainly not going to say I will come back by then, but I will ask my colleagues to look at this.
Lord Jenkin of Roding: My Lords, before the Minister sits down, there is one problem that has been put to me about this. I apologise to my noble friend for not being in the House at the moment he rose. There are quite a lot of donor-conceived children who are born after treatment approved by the authority when the woman becomes pregnant. Thereafter, no information from the clinic may actually reach the authority, and even the clinic may not know whether a child has been born from that treatment. In her further consideration, can the noble Baroness confirm that there is no obligation on either the parents or the clinic to let anybody know that it was successful and a child was born?
Baroness Royall of Blaisdon: My Lords, I will have to come back to the noble Lord with clarification on that issue. I will gladly do so.
Lord Winston: My Lords, before the noble Baroness sits down, I have had personal experience of exactly that happening—parents deliberately refusing to communicate with the clinic after the birth of a child, and doing so repeatedly. This is a point of law which might not be enforceable.
Earl Howe: My Lords, I am grateful to all noble Lords who spoke in favour of the amendment, as it undoubtedly influenced the Minister in her generous decision to take this issue back and look at it again. If I were the child of a donor-conceived person and my parent had died but I knew that he or she had been donor-conceived, I would have a direct interest in wishing to avoid marrying my own aunt. Considerations of that kind are extremely powerful, and as powerful for the donor-conceived child himself. I ask the noble Baroness to look at the particular case she herself articulated. I am grateful to her for agreeing to do so. I beg leave to withdraw the amendment.
Amendment, by leave, withdrawn.
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Clause 25 [Restrictions on disclosure of information]:
Lord Patel moved Amendment No. 132:
Clause 25, page 26, line 22, leave out “of information falling within any of paragraphs (b) to (e) of subsection (2) of section 31 and is”
The noble Lord said: My Lords, I spoke to this amendment, which addresses confidentiality, in Committee. Many clinicians working in the field of in vitro fertilisation have found this measure difficult to work with in practice. Professor Peter Braude from St Thomas’s Hospital has raised it with the Department of Health. He received a letter clarifying some of the issues raised by this amendment. Among other things the letter explains that there is a further exception to the prohibition on disclosure in the Human Fertilisation and Embryology Act, which was added by the Human Fertilisation and Embryology (Disclosure of Information) Act 1992. This Act allows a patient to consent to the disclosure of information for the purposes of their own treatment. The letter also explains that the restrictions in new Section 33A introduced in this Bill apply only to information held by HFEA licence holders in their capacity as such, and that the restrictions in the 1990 Act are designed to comply with the requirements set out in the European Union tissue and cells directive.
I confess that I remain unclear as to why the consent of the person to whom the information relates is not sufficient for it to be disclosed for any purposes the person chooses, subject, of course, to the privacy of any third parties, or why the restrictions on medical information pertaining to licensed IVF treatment are so much more onerous than those applicable to other forms of treatment, including infertility treatment that does not need to be licensed. It has always seemed anomalous to clinics as well as to the majority of patients that specific consent to disclose details of their treatment to others has been a requirement. Indeed, explaining the issue to patients is often greeted with surprise given that they have been used, in the preliminary assessments of their infertility and in the provision of first line treatment, to normal lines of communication between those who are involved in their care—for the most part hospital clinicians and general practitioners—being established without their permission being sought.
Clinical problems which could be in breach of the law include: gynaecological referrals of patients treated by the licence holder and their clinics; communication with other health professionals; admissions with complications after IVF treatment; antenatal care—which is where I mostly come across these patients—referral for screening; neonatal care and even clinical care in later life. All working in the sector would prefer a system that allowed the routine nature of IVF treatment to be acknowledged and for clinical staff to be able to communicate with colleagues routinely without fear of prosecution.
In other areas of sensitive medical practice such as mental illness, HIV and abortion, confidentiality issues do not seem to require the same degree of legislative imposition. In between Committee and Report, I was on a night flight to Cape Town and a lady on the other side of the aisle experienced difficulties with which I
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I wonder how we might move this forward. It might be possible for the HFEA to provide guidance in its code of practice for clinicians to follow, particularly on patient safety issues. They would thus avoid breaching confidentiality laws, which carry draconian penalties if they are found guilty of breaking them. I beg to move.
Lord Winston: My Lords, I have pointed out in the past that confidentiality is a really difficult issue. Numerous Members of your Lordships’ House have made pleas for us doctors to take account of patients’ abilities as parents and the need for a father, or whatever phrase we have discussed, when assessing a patient’s suitability for in vitro fertilisation. With confidentiality as it is now it is inevitable that, if alarms are raised about some aspect of the past childcare of a person seeking in vitro fertilisation, we could not go to another individual without the permission of that person, who would clearly not give that permission. That is a very good example of why the confidentiality clause is, right from the beginning, a total nonsense. It goes against accepted medical practice in every other form of medicine. If your Lordships really want doctors to assess patients for their suitability to be good parents in the future, there has to be an acceptance that a patient’s confidentiality is at stake. That has not been grasped during the discussion of this Bill, and it seems a very important principle indeed.
Baroness Finlay of Llandaff: My Lords, I support the amendment and I will point out a problem that I can see arising if it is not made to the Bill.
These women have gone through huge emotional trauma in trying to conceive, about which we have heard much. We all know that women are at risk of a postnatal psychosis. I cannot see how clinicians can act in the best interests of the patient if they are hamstrung by a confidentiality clause which is outwith the normal rules of practice. The amendment seeks to regularise that position.
I also have a slight concern that those women who are insistent on very tight secrecy may actually be in a state of denial about the fact that they needed infertility treatment in the first place. In my mind, that could be a red flag indicating that they might be particularly at risk in the future, because it would suggest that they had not come to terms with the situation—unlike the patient treated on the aeroplane by the noble Lord, Lord Patel, who was not in a state of denial.
The amendment is important for the functioning of clinical practice in the best interests of patients.
Lord Walton of Detchant: My Lords, I very heartily support the amendment. No privilege attaches to communications between doctors and patients in the
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One of the principles of medical care is that it is proper, usually with the patient’s consent, to share medical information with other members of the healthcare team involved in the medical care of that individual. In that situation, because the rules relating to the HFEA and the disclosure of information about individuals who have undergone IVF treatment are so clear, so precise and so restrictive, there is every likelihood that a doctor involved in clinical practice—not least in gynaecology or in giving advice on other infertility issues in the course of ordinary clinical practice—may inadvertently breach the HFEA rules. That is particularly the case if the individual in question not only practises, say, as a gynaecologist or as someone interested in the problem of infertility, but works in a HFEA-licensed centre as a clinician. They could well be in breach of the Act and liable to criminal prosecution for revealing information about IVF treatment that had previously been undertaken, which would be clearly very important in the management of that individual’s care.
One could give many other examples, but I can only say that I strongly support the amendment, because the principles are of crucial importance to the practice of medicine.
Baroness Butler-Sloss: My Lords, I am very impressed by those noble Lords who have spoken who are members of the medical profession. Until I heard the speeches, particularly those of the noble Lords, Lord Patel and Lord Winston, I had not appreciated the dangers that medical teams may be in for unknowingly being in breach. The amendment seems to meet a very important need for medical teams, and I strongly support it.
Lord Turnberg: My Lords, I strongly support the amendment not so much because of the impact on the medical profession but because of the risks to the patients, which should be the driver for this amendment. The risks to patients of information not being shared with other healthcare workers are considerable.
Lord Jenkin of Roding: My Lords, I, too, support the amendment. I say to the noble Lord, Lord Patel, that if I found myself on a long flight while 26 weeks pregnant—which I have to say is unlikely—there are few members of the human race that I would rather share the plane with than him.
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My question is not in relation to the patient him or herself, which is obviously a matter to which noble Lords on all sides of the House have given attention. The problem is that, as I understand it, the amendment is anxious to use the information for the benefit of patients generally, for the practice of medical care and for everything that is in the amendment. I would have thought that of course the rest of the team will know who the patient is, but if you wish to disclose information about a particular case that could be of wider interest to the professions involved, surely anonymity is a protection.
We had this over and again in debating the Human Tissue Act, which I am sorry to come back to again. It is the question of how far anonymising data would be a protection. If one is going to provide information, even to the extent of writing an article for a medical journal, you would not dream of mentioning the patient’s name or anything else about him or her, because it would be anonymised. At the same time, there might be valuable information that should be available to the professions.
The puzzled look on the face of the noble Lord, Lord Winston, suggests that I am barking up a very wrong tree; in which case I will sit down.
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