Examination of Witnesses (Questions 20-39)
RUTH DEECH, BARONESS KENNEDY OF THE SHAWS AND SUZI LEATHER
WEDNESDAY 24 APRIL 2002
20. You have already faced some reasonably tough challenges in your existence but what do you think about the challenges that are most likely to hit you in the future? What do you think will be the big ones?
(Suzi Leather) I am only seven weeks into this job so I am still very early on the learning curve, but let me give you some first impressions. When I came in, I asked myself three questions. One, is the HFEA doing a good job? Secondly, is that likely to continue? What is the read forward in what we are doing? Thirdly, do we need to be doing anything differently? On the first question, are we doing a good job, I think Ruth has covered that very admirably. The HFEA is highly respected, not only in this country but internationally. It is increasingly looked to as the model for regulation in this field. If I might take this opportunity of paying tribute to Ruth and to Sir Colin Campbell before her, a great deal of that is because of the leadership shown by Ruth and Colin. It is a very difficult job and they have both done it extraordinarily well. It is also due to some pretty good legislation in the first place. It clearly reflects the strength of the UK science base and that would be an issue for this Committee. In terms of public perceptions, there is probably very little detailed understanding of the work that the HFEA does and a great deal of that comes from the press. I think the level of understanding of the procedures that we are regulating is probably quite low. For instance, a taxi driver asked me what the HFEA did and I explained some of the micro-manipulation techniques. His answer was, "Cor blimey, whatever happened to the birds and the bees?", so there is quite a gap potentially. Is this job likely to continue? There have been very significant changes since the HFEA started. Certainly the science is very fast moving but there have also been changes in the public expectations about openness, accountability, consumer demands for information. The whole issue of how science progresses and how the public gives consent to science is quite important. Do we need to do anything differently? What are the things that are coming over the horizon? Maintaining public confidence in the regulation of the fast moving area of science is quite difficult. What the public do not like are surprises. We learned that from GM. We have to keep the gap between what is happening and what the public knows about as small as possible. That issue of communicating what we are doing, communicating what the possibilities of science are, what the benefits and disbenefits are, is probably the core challenge for the HFEA.
(Ruth Deech) I would agree. It is very important to maintain confidence in the HFEA in order that stem cell research and whatever else lies over the horizon can be acceptable and properly governed. I also think that over the years the effects of the human rights legislation will have to work themselves out. Some of the decisions that we made very recently can be explained by our careful regard to the legal advice we were given about human rights. That is going to become more difficult to stop people doing things when they are likely to rely on human rights legislation and on European legislation. Another challenge will be coordinating or at least finding out what is going on in Europe and how new legislation is going to affect the work.
21. Putting the religious arguments aside, do you think the general public are literate enough to understand the difficult arguments that prevail?
(Ruth Deech) Sadly, no. I think that British science education has not been very good. The newspapers do a fairly good job now of explaining things like, for example, Dolly the sheep and the effects of that, but like Suzi I have found quite a lot of bafflement if I have ever talked to a member of the public who knows nothing about this. Even when talking to others, they have very often misunderstood what they have read in newspapers and really know very little, especially about the more complex areas. I knew next to nothing when I started and I think there is a great need for public education. It is because of the poor science education of my generation in schools.
22. Welcome, Baroness Kennedy.
(Baroness Kennedy of the Shaws) I am sorry I am late. I am in the middle of a murder trial at the Old Bailey.
23. Advisers advise and ministers decide. I wonder to what extent you think ministers have been able to side-step some of their decision making responsibilities by the presence of your Commission.
(Baroness Kennedy of the Shaws) The Commission came into being two years ago and there were some departments which did not see the Commission as being somehow a Commission which referred to them. I particularly would refer to the Home Office. We were quite concerned that, in making decisions about legislating for the use of DNA and the expansion of the retention of samples, for example, ministers in the Home Office did not at any stage consult with us about how they would do that and whether there would be oversight and so on. That did concern us. With regard to the ministries which have a direct relationship with us, the Minister of Science within the DTI and Philip Hunt inside the Department of Health, we found we have had very clear avenues of contact and that they have wanted to hear from us what the Commission's thinking is on all the issues that have been on our agenda. I have not found a sense of displacement. There was a moment when it was clear that there was a group being set up to look at practical implications for the National Health Service and we wondered what exactly its role was, but having met with senior civil servants in the Department of Health and those who were on that commission, it was clear it had a very restricted remit and was not looking at the moral, ethical issues which our Commission is engaged to look at and to make recommendations with regard to regulation. We are not discontented at all with the nature of our relationship with government but we are arm's length from government. We are advisers to government and sometimes government will hear us saying things that they will not necessarily want to hear. That is the nature of an independent commission.
24. To what extent do you think ministers avoid their decision making responsibilities for which they are accountable to Parliament by being able to rely upon your advice?
(Baroness Kennedy of the Shaws) It is fair to say that obviously there must be concern, in a democratic society, if there is too much hiving off of decision making to bodies which are not democratically elected, and I would share concerns that anyone might have about that. It is one of the things very dear to my own heart. Our Commission is not in the business of decision making. We come to very careful views with regard to the need for regulation, the ways in which we can protect citizens from abuses, invasions of their privacy and so on. We then make recommendations to government and government have to make the decisions. There will be times when governments may seek to suggest that it is the Commission that has made the decision. I in turn make it very clear that we are advising and that government has to decide. The ministers will make the eventual decisions and that will be made clear to them.
25. Do you feel the advisory and regulatory functions should be kept separate and, if so, do you think that is happening at the moment?
(Baroness Kennedy of the Shaws) I do think they are being kept separate at the moment and I have to always remind people that the position of our Commission is rather different from the position of the authority that deals with the HFEA because the HFEA has a role in deciding who is licensed, who is not and so on. We do not have a role like that. Our position is to advise and then government decides how to regulate. We will give suggestions as to how that could be done effectively and we hope they take our advice.
26. I wonder what your views are on the introduction of confirmation hearings for appointment to government bodies by select committees?
(Baroness Kennedy of the Shaws) It is not something I am averse to. There has to be real openness. I have always been a campaigner for openness in government. As soon as I became chairman of this Commission, I made it very clear that I wanted the Commission to be conducted as openly as possible. One of the problems with the whole issue of science, I felt, was about a loss of trust. One of the ways that you inculcate trust is by conducting your business as openly as possible and showing that you are independent. We have made a decisionand it was not an easy one to get through; people had to be persuadedthat it was good to conduct everything openly. Some people had reservations. They felt that on a commission you may want to have discussions which should be in private. I felt it was very important, given how crucial this is in terms of public debate, that at this moment in time there is very open discussion on genetics. We decided after consideration that this Commission should sit publicly. All our minutes are on the website. We invite the public in to be present at our meetings and to hear our discussions which are conducted openly. The agenda is on the website and we conduct as many public meetings as possible. We have a sort of road show where we take the meeting out of London. We have been to Newcastle, Edinburgh, Cambridge and we are going to Manchester in a few weeks' time and we are going to Belfast later in the year. The idea is that we take this to where the people are who are interested in these issues and give them the opportunity to engage with the Commission. We have also set up a consultation panel. We have 106 people in direct link to the Commission, using the internet, who are part of a consultative panel of people whose families have genetic traits, so that they can interact with the Commission. The idea is that in this area you need very open processes. Anything that can add to that openness I am very keen to look at. In our Commission, all the appointments have been made using the Nolan principles. I applied for the job of chairman. I was in competition with others. I was interviewed and appointed by the chief scientist and others who were on the interviewing panel. I think I persuaded them that I was robust enough to resist pressures of all kinds, which I have a reputation for.
27. Do you think confirmation hearings would increase the level of openness or do you think they would be unnecessarily bureaucratic?
(Baroness Kennedy of the Shaws) It would be worth looking at for important roles. It could become bureaucratic if you did it for every position but there are some roles where public confidence is so important that you might want to look at it. For serious, big quangos, that might be something to look at.
28. And a quango such as yours?
(Baroness Kennedy of the Shaws) I would be happy to be confirmed in a public way.
29. It could be that you might feel you had more of a mandate were you to be subject to such a hearing.
(Baroness Kennedy of the Shaws) It is certainly not something I would have any resistance to and there are lots of other roles in public life where one thinks it would be good if people did have some sort of confirmation that this was what the public wanted to see rather than people who are just chosen by ways that are not publicly examined.
30. Suzi, as somebody who has just been appointed, I wonder if you would welcome that?
(Suzi Leather) I would welcome it for two reasons. I think it would increase public confidence and there is an issue of principle and openness. I would support it. If you want to use this as an opportunity to ask any questions, I would be delighted to help you in that respect. The openness and the communication of science that Baroness Kennedy has talked about is hugely important in establishing public confidence. The HFEA has not been a particularly open organisation. There are some important reasons for that to do with patient confidentiality, for one thing, and the Act itself makes it quite difficult to be open about a lot of what we do. However, I am very keen that we move towards a more transparent system. This summer we are launching, for instance, a public consultation on sex selection and I hope we will have public meetings as part of that. I am very admiring of the kind of things that the HGC has done. They are expensive to do and that has probably been the other, highly limiting factor in openness for the HFEA. In terms of research, I think there are certain almost costless things you can do to help public confidence. I would be looking, for instance, on our website to publicising the research that we have approved, and, importantly, an abstract which the researchers lay out: what are the public benefits that they see coming from that kind of research? I think, in order to generate more confidence in science, the public need some signposting of where the science is going, particularly where public money is used for science. It is absolutely justified that the public should see what the benefits and the disbenefits might be.
31. The HFE Act is ten years old now. It was updated last year to enable the use of embryos for stem cell research. Is it time it got a major overhaul?
(Ruth Deech) There are some areas which could be overhauled to take account of two things. One is human rights legislation and the other is that, in my view, there is too much confidentiality laid down in the Act. For example, no one can get in directly to repair our computer because of confidentiality. It is very hard to get outside, expert advice. It is very hard to do or to authorise follow-up studies because there is excess confidentiality. Baroness Kennedy will know that I took the same line at the HGC. I think it would be a mistake now to put down too much confidentiality for the future because we need to know the results of what we are doing and we need follow-up studies.
32. What are the areas in existing legislation that you would like to see changed or tightened?
(Ruth Deech) There is nothing that I would like to see changed or tightened. The procedure for appeals needs looking at from a human rights point of view. I would relax the confidentiality provisions but the structure remains pretty good.
33. Do you feel that introducing new legislation could put a block on activity? Could it hamper the progress of valuable research?
(Ruth Deech) There is always a danger, when this subject is introduced in Parliament, so I have been told, that it could all become enmeshed with opponents of abortion and other such issues. That may be a reason why the Act, which I said earlier I thought was good and flexible, has not been much touched in the last 11 years because one does not quite know what attitude will be taken. There is a risk if one reopens the issue.
34. I am sorry if I was very firm with you but I think the record will show that it was useful. In taking that decision, did you receive any advice from ministers?
(Ruth Deech) No.
35. Baroness Kennedy, the Committee in the previous Parliament recommended that the Human Genetics Commission should monitor the use of genetic testing by insurers. I would like to know what progress you have made on that and whether you have detected any breach of the moratorium on the part of insurers.
(Baroness Kennedy of the Shaws) I am happy to say that we have no evidence yet of any breach of the moratorium. Having had that request by this Committee to monitor what was happening, you will have seen that we responded very quickly and held the toes of the insurance industry to the fire and managed to produce a moratorium fairly speedily and one in quite wide terms. At the moment, we feel content that that is operating, but we are looking very closely at how it is going.
36. The House of Lords Stem Cell Research Committee has suggested the establishment of a "body with oversight of clinical studies involving stem cells, or extending the membership and remit of GTAC to achieve the same ends" and "endorses the Department of Health's proposals to establish a stem cell bank". Do you think that a new body is needed to regulate research on stem cells or should GTAC do it?
(Suzi Leather) What is proposed is sensible. From the HFEA point of view, the Lords draw attention to the fact that this will be an increased area of our work, although I know it is the view of the Department of Health that it is not going to make a major impact on what we do. It is difficult to say at the moment how burdensome our aspect of stem cell regulation will be. We are only responsible for pulling out the stem cells from the embryo and ensuring that they then get reliably, traceably deposited in the stem cell bank. That, at the moment, is taking up quite a lot of work. We have two or three people working between a quarter and a half of their time at the moment on the issue of stem cells. We are having a piece of work done to evaluate what the impact of the regulatory burden of the stem cell work will be for the HFEA. Of course, we will have to increase the peer review capacity but from our point of view it is really the issue of joined up regulation between the HFEA and whoever has oversight over the stem cell bank.
37. You are saying you would like to do it yourselves?
(Suzi Leather) No. I am sorry if I gave that impression.
38. You would welcome which? A new body or GTAC extending their role?
(Suzi Leather) I am only going to express the view that whoever has responsibility for stem cell regulation for the bank, as far as possible, acts in an open way and communicates to the public what the benefits of doing this work are. From our point of view, it is very important that we establish good, joined up regulation in this field. I am certainly not arguing for the HFEA taking over all responsibility for this.
39. What about the HGC?
(Baroness Kennedy of the Shaws) We feel there has to be an independent body. It should be transparent. It should be of people with real expertise in what kind of research is really going to produce valuable results, because there is a balancing act as to the benefits to society that will come from any research as against the scruples and reservations ethically. We want to see a body which is independent, open and which has the kind of expertise which will really recognise where this research might be going.