Clause 24
Human Fertilisation and Embryology Bill [Lords]
10:30 am
Dawn Primarolo (Minister of State (Public Health), Department of Health; Bristol South, Labour)
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 Government’s 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 Government’s 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 unsuccessful—that 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 treatment—that 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 Government’s 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 onerous—there were a few of that view. We considered the information powers, because we appreciated the comments. However, we remained of the view that it was important for the HFEA to collect data for all licensed treatments and that we were striking the correct balance between protecting the confidentiality of patients and allowing disclosure under justifiable circumstances. The BMA supported us in that approach. The hon. Gentleman’s second question was specifically geared to how the provision might create regulatory burdens. My response is that the HFEA’s new electronic data interchange system with clinics should certainly help to ease any feelings that the there is an undue burden of collection of information.
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 disparity—which I will deal with first—between 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 age—in terms of other legal requirements and maturity—to 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 rather a long time ahead and their circumstances could be different by then. That is part of the complexity of counselling when an individual is considering being a donor; it must be thorough. It might be the case that the donor would have access to counselling information at the time that the request for identification was made, just in case. That is not an absolute condition, but it would have to come back round the loop. Counselling would be part of their preparation at the very beginning, as they took the decision to be a donor, but would be accessible again at the time when identifying information could be made available. I understand that there is provision for that. These are delicate points.
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.