House of Commons
|Session 2007 - 08|
Publications on the internet
General Committee Debates
Human Fertilisation and Embryology Bill [Lords]
Human Fertilisation and Embryology Bill [Lords]
The Committee consisted of the following Members:
Hannah Weston, Celia Blacklock, Committee Clerks
attended the Committee
Public Bill Committee
Tuesday 10 June 2008
[Mr. Jim Hood in the Chair]
(Except clauses 4, 11, 14 and 23, schedule 2 and any new clauses or new schedules relating to the termination of pregnancy by registered medical practitioners)
The Chairman: Before we begin, I should say that, if hon. Gentlemen wish to remove their jackets, they are welcome to do so.
Register of information
Question proposed, That the clause, as amended, stand part of the Bill.
Dr. Evan Harris (Oxford, West and Abingdon) (LD): I take this opportunity to welcome you to the Chair, Mr. Hood. We have made excellent progress and I am sure that we shall do so today. As I said during the debate on the amendments to the clause, I have a couple of brief questions to ask. What is the basis for the current amount of data that is collected? The main problem that has been raised with me is the regulatory burden of a full amount of information given in the register of information for all treatment cycles, the majority of which do not result in a pregnancy.
We have debated why it is necessary to maintain a register of information in respect of the treatments that produce a pregnancy and a child. There are at least two main reasons. The first is to enable contact to be made in the future, if requested by a child born through in vitro fertilisation, particularly in respect of donor gametes and non-identifying or identifying information about the genetic parent when the person is not the legal or social parent. The second reason is to ensure that the data is accurate on the outcomes of IVF clinics, given the nature of the business and the relatively high stakes involved compared with other businesses, and thus the potential vulnerabilities of the patients, who are the consumers of the business. The clinicians understand those two reasons, but they ask why it is necessary to have identifying information in such great detail about all patients even when a pregnancy does not result or is not known to result. I imagine that reasons will be given for such action, but I just want to deal with them in advance.
It is necessary to retain information in case of adverse effects of some treatment. However, in that sense, it is not different from any other treatment. It is necessary for medical records to include information so that it is
Will the Minister say whether the Human Fertilisation and Embryology Authority has received the same representations as I have about the extent to which the regulatory burden of the register of information and requirements will be onerous? Does it recognise that there might be scope for reducing the amount of information, particularly identifying information, that is held on a central database for no good reason over and above the reason that such information is available in medical notes on safety and outcome measures, when no child is produced or known to have been produced? If it recognises that that is a regulatory burden, has any consideration been given to how it could be reduced? While that might have been appropriate in 1990, standard IVF and insemination, particularly where, sadly, it does not result in a pregnancy, are now routine medical techniques and interventions.
It is peculiar that for those routine medical interventions, a great amount of information must be submitted to a central database which has not as yet been used for any research purpose. Without having a central database of identified patients, it is still possible to do research where non-licensed treatmentswhich could be more extensive in terms of drugs and surgeryare not subject to such requirements. It is a valid point, and I would be interested to hear the Ministers response.
Mark Simmonds (Boston and Skegness) (Con): I join the hon. Member for Oxford, West and Abingdon in welcoming you to the Chair, Mr. Hood, and let me say how much I am looking forward to serving under your guidance and chairmanship. I have three quick questions for the Minister on clause 24 stand part that we did not manage to cover in the debate on the amendments.
The first point is about counselling. Under the clause, the donor is informed when a request has been made for information about them. In most circumstances, there will be many years between the donation that leads to the genetic offspring and the genetic offspring asking for information about the donor. It is a minimum of 18 years, but it could be much longer. Clearly, I welcome the stipulations in schedule 4 that relate to counselling for the person requesting the information, but what about counselling for the original donor? Obviously, it should not be compulsory or mandatory, but there may be significant changes of circumstancesthe donors life may have changed dramatically, they may be in a marriage or another relationship and it could be extremely
The second point is about the disparity in ability to request information at different ages. As I understand it, the donor-conceived person is able to request non-identifiable information at 16, but other information is available only at 18. Perhaps the Minister could put on the record the logic behind that particular difference. It may be simply that people are legally allowed to be in sexual relationships at the age of 16, while 18 is the general cut-off point for moving into adulthood.
The third point is about proposed new section 31ZB, which deals with checking whether people in intimate relationships are genetically related. It is about getting the permission of the other party in that intimate relationship. What happens if both parties in that intimate relationship are under the age of 18, and therefore only able to receive non-identifying information, when the point of getting that information is specifically to identify whether the partner in that intimate relationship is related to them?
The Minister of State, Department of Health (Dawn Primarolo): Good morning, Mr. Hood; I welcome you to the Chair. I will deal first with the questions raised by the hon. Member for Oxford, West and Abingdon. I wish to make a request to help me focus on answering the points raised. I say now that there is absolutely no criticism implied, bit it is difficult when the hon. Gentleman puts the case and then put the Governments case as well. He answers his own questions and ends with a series of questions that he has already answered in the course of what he has said. I will repeat them on this occasion as the Governments position as well, but we need to try to focus.
The hon. Gentleman asked specifically about the disclosure of information regarding patients, particularly where there have been unsuccessful cycles of IVF. He went on to give the answer. As he pointed out, the answer is, first, that the information has to be collected because at the beginning of the cycle it cannot be known that the cycle is going to be unsuccessfulthat there will not be a resultant child. Secondly, the information could be relevant to subsequent courses of treatment and follow-up cycles for the individual. Thirdly, the collection of information clearly provides for long-term consideration and research into fertility drugs and comparing the effects on women, whether there is a pregnancy or not. The information provides the basis for further research. Finally, there may be other important areas in the consideration of treatmentthat links back to the question of identifying information, particularly follow-up information. Therefore, the hon. Gentleman put the case for why the proposals are as they are, and he answered on behalf of the Governments position as well.
The hon. Gentleman asked two further questions. The first was about representations that he had received. He asked whether the Government had received the representations that he had received about the collection of information and asked what was our response? Yes, we did receive those representations. It was not a majority view that the requirements were onerousthere were a few of that view. We considered the information powers, because we appreciated the comments. However, we
In putting all of those points together, the hon. Gentleman clearly justified the system. We considered some of the views put before us and discussed the matter further. We came to the conclusion that we had struck the right balance. We were supported in that by other stakeholders. We believe that the regulatory burden will be considerably alleviated by the system of electronic exchange.
The hon. Member for Boston and Skegness asked a series of questions, particularly about the disparitywhich I will deal with firstbetween the information to which people are given access at 16 and 18. Again, he touched on the answer in his remarks. We have spoken to all of the stakeholders and, of course, the Committee does not come cold to the discussion. We are talking about a consultation of more than a year, with the consultation results published, followed by draft legislation and the pre-scrutiny stage, and then consideration in another place, before the proposals get here. We have had the opportunity for consideration a number of times. The view was that 18 was the suitable agein terms of other legal requirements and maturityto give people access to identifying information about donors. This is, of course, significant personal information that could have a dramatic impact. We cannot be sure that the individual knows already that they are the result of a donation of either sperm or egg. We are relying on the parents to have had discussions with their son or daughter. It was agreed that in extreme cases where the individual has not been informed, 18 is the sensible point for access to information.
The hon. Member for Boston and Skegness also asked why we set the age for access to non-identifying information at 16. I am assured that access at that point is sufficient to ensure that within the records there is no family connection. At that point it is not necessary to know the identity; it is enough to be assured. I am not clear whether in extreme circumstances there would need to be a loop back into the information, and the HFEA would need to consider whether or not identifying information was in the best interests of the individual. I will check that matter and come back to the hon. Gentleman. There are two steps. One applies to, for instance, an individual who at age 16, with consent, is going to get married. It also applies where the parents know that their son or daughter is planning to live with or, as the hon. Gentleman said, be sexually active with a partner, and they want to make sure of the information.
Then the hon. Gentleman asked about counselling for the donor. That was covered in previous debates about counselling when the donor becomes involved in the IVF programme. Of course, an individual has to be aware that the request for information could happen
The hon. Member for Boston and Skegness asked a question about new section 31ZB and the fact that it does not enable the applicant to find out identification. It does, however, provide access to the information to ensure that there is not an issue that would lead to the need to identify the donor. Should, for some reason, the result that came back from the HFEA raise an issue of concern, that would open up the debate automatically, regardless of age, because the individual would need to know why. Imagining all the circumstances, it is difficult to see that there would not be some pressure on the system at that point. The HFEA would have to deal with that. I hope that I have dealt with the points that were raised by both the hon. Member for Boston and Skegness and the hon. Member for Oxford, West and Abingdon. On the question of consent and information, they have tabled amendments to the next clause that specifically focus on those issues and when consent is needed for the passing on of information. Perhaps some of the other points will be picked up again then.
|©Parliamentary copyright 2008||Prepared 11 June 2008|