Examination of Witnesses (Questions 40-59)
RUTH DEECH, BARONESS KENNEDY OF THE SHAWS AND SUZI LEATHER
WEDNESDAY 24 APRIL 2002
40. The House of Lords thought you should both have an impact to this process and you would welcome that. Do you think you have the expertise to get that body moving?
(Baroness Kennedy of the Shaws) On my Commission there is enough expertise. We have a number of very highly qualified scientists in this field, including Sir John Sulston who led the genome project at Cambridge, and other geneticists. I would have thought that we could certainly contribute some real expertise in the creation of that body.
(Suzi Leather) At the moment, I am satisfied that we have the capacity to do it. We have, as the Lords have suggested, to keep an eye on the regulatory burden of our stem cell work so that we have adequate resources to cover that, should it turn out to be quite a large area of responsibility.
41. Do you work together or is this the first time you have met this year?
(Baroness Kennedy of the Shaws) The HFEA has representation on my Commission and Ruth Deech has been that person since its beginnings. Suzi Leather will take Ruth's place from now onwards. We are very closely connected and we engage on these issues all the time.
42. Your view would be that this new body would be both responsible for regulation of stem cell research and for the oversight of stem cell banks. Is that right?
(Baroness Kennedy of the Shaws) Yes. I think it could have that dual function very easily.
43. You are all happy about that?
(Ruth Deech) Yes.
44. Can I ask the HFEA how they use overseas expertise and indeed how you monitor the regulation and advisory processes in other countries?
(Suzi Leather) We do use, in our peer review process, people from outside the United Kingdom. I am very keen that we extend that. That enables more confidence within the scientific community as well as within the public. We have recently added five people with expertise in the stem cell area to help us do the reviews in that.
45. You are in touch with all the regulations that are going on in the rest of the world as they change or come into place?
(Ruth Deech) There are not that many, to be honest. It is more the other way, that people in the rest of the world are looking to us. The regulation in the rest of the world is very patchy. There is next to nothing in Italy. Central Europe is rather stricter. There is some communication in France but in my time a delegation was summoned from the HFEA to give evidence to the National Assembly in Paris. The HFEA was summoned to Japan and various other places. It was largely a one sided process. There is next to no regulation in the States either so it tended to be the HFEA advising the rest of the world, but we do have some resources as to what is going on there. There is great disparity.
(Suzi Leather) Recently, the Canadian Government has looked to the HFEA as a model and our chief executive went out to Canada to advise the Canadian Government on our model.
46. Are you keeping an eye on the question of developing international regulation in this area?
(Ruth Deech) There are such grave cultural and religious differences between countries that it is quite difficult. Those international treaties that do exist are of a very vague language. We all agree that there should be no reproductive cloning but many countries have no laws to stop that. I think it is going to be very hard. Our finances were such that the HFEA could not afford, except very rarely, to send anyone to an international conference, so we were reliant on people coming to us or, if I was funded by a university, I could go but financially it has been quite difficult to go unless foreign countries have paid for us to go to them.
Dr Iddon: We have met this conflict in Europe where there is a great difference between the southern European members and the northern European members.
47. Can we talk about consultation? Suzi, you said communication is the core challenge for the HFEA and you said that you had not been particularly open in the past. With those thoughts in mind, how do you see the development of consultation processes for sex selection, given that that is a very sensitive area for a lot of people?
(Suzi Leather) You are right; it is a very sensitive area. We have a limited amount of money to spend on this, £48,000, which does not buy a great deal of public process. Nevertheless, we are currently drawing up a consultation which will happen this summer. We are due to report to ministers by the end of the year. As part of that, I would want to have as much public debate about this as possible. I do not know if anyone saw the programme on television on Monday night but I am very glad to say that that covered this issue of sex selection. There are huge ethical issues involved in the new mechanisms that have been developed in the United States for sorting sperm that is going to create male and sperm that is going to create female babies. There are also straightforward safety issues and consumer issues: how reliable is this technology? The ethical issues and the welfare of the child issues will always be the most important ones.
48. When you consult, are you presenting a balanced case or a case that is loaded one way or the other?
(Suzi Leather) Absolutely not loaded, no. We are interested to know what the issues are for the general public and where the balance lies. In 1993, there was a public consultation on sex selection which approved the use of sex selection in order to avoid serious, sex linked diseases. The view of the general public at that time was that using sex selection, for instance, for family balancing was regarded as too trivial to be permitted. It would be interesting to see whether public views have changed.
49. Baroness Kennedy, you referred to your public consultation programme. Is that an education programme or is it a listening programme?
(Baroness Kennedy of the Shaws) We see it as both. Part of it is about consultation to make sure that we are in touch with the Zeitgeist, how people are feeling about many of these issues, but inevitably the way that it is conducted involves many people in the learning process, as indeed it did for me joining the Commission. We usually have a presentation or sometimes a film to stimulate the debate. It ends up being both because people are learning by virtue of the nature of the debate.
What is the budget for your consultation programme?
(Baroness Kennedy of the Shaws) We did a similar thing on "Whose hands on your genes?" but we did a consultation on the privacy issues around genetics and that cost us in the region of about £50,000. We used the People's Panel which is quite an interesting way of seeking to do this. A couple of years ago, the People's Panel was established which gave you some cross section of the public and it was to be used for this kind of purpose, so we found that was quite a useful way of getting a test on some of these issues. It threw up quite interesting responses as to what concerned the public.
51. Let me ask you about the Green Paper on genetics that we hear is coming along. Are any of you playing a part in the production of that? If not, what do you think should be in it that we do not know already that is contained in a million other papers that we have all read over the last year or so: ethics, morality, what genes are and so on. Can you see a justification for it?
(Ruth Deech) There may be a danger of overlap and duplication, possibly. The Government did review the offering of scientific advice in a White Paper a few years ago and brought together the existing committees roughly under three umbrellas. I think it would be as well to stick to that format. As many reports as one gets, I suppose, will produce different answers.
(Baroness Kennedy of the Shaws) I believe that the idea behind it was about the very thing we are discussing, which is trying to create public debate. If there was a Green Paper, it could become the basis for a much more public debate. I have met with those involved and they have consulted with us and they have been kept abreast of what our work is, so they are keeping a close connection in that way. One of the major concernsand the Green Paper is particularly addressing itis how does this impact on health care provision within our society. What will the impact be on the National Health Service, for example? There are very serious considerations where you do have to horizon gaze and look at how you bring this into considerations of all sorts of things, including training. It is about trying to think about this ahead of the game, how you train professionals for counselling and so on.
52. Suzi, have they roped you in yet?
(Suzi Leather) No. I have not personally been involved in this.
53. In the massive experience you have had in this field over the last few years, do you see a gap that we need somebody to say something important about? Is it all there somewhere if we just dig it out on the internet or some other way? Is there anything you have picked up in your experience that is missing?
(Suzi Leather) The gap is the open process. I do not think it is easy to fill that. We all have to change the way we operate and we all have to be more open and transparent. The issue of horizon scanning is quite important and that is something that perhaps the HGC and the HFEA could work on together in the future. The public needs to be signposted on scientific development. They do not like being surprised. In order to have confidence in the regulatory process, we need to present regulation as being one step ahead, or at least keeping up with scientific developments, not one step behind.
54. When we talk to Danish parliamentarians about some of these issues, they cannot do any genetics research because there is a substantial Christian community which, the moment you open it all up, closes it all down. The cost of openness might well be inactivity. Have you considered that that might be one consequence of where you are going?
(Suzi Leather) The area that I have been most closely involved in until this time has been in food and agriculture. What I see has been the huge damage caused by confining debate to experts and scientists and by keeping a gap between what they are talking about and what the public knows about. The public does not like to be surprised. The public can understand complex issues as long as you communicate clearly what the benefits and costs are.
(Baroness Kennedy of the Shaws) The cost of secrecy is far greater. The cost of closure, the cost of not having open discussion, is much greater than ever it could be about opening it up and being prepared to argue in the market place of ideas what the benefits are. Our experience has been that, on the one side, there is concern about some of the developments here, but the general public want to travel hand in hand with scientists on this. They want to be kept abreast of what is happening and they want to make sure that regulation takes place where it is required as we are more informed about what is taking place. There is a great deal of genetic altruism and goodwill out there in society, where people do feel that the benefits from this may be considerable; but as long as there are sufficient protections against abuse there is a will for possible cures and so on to be investigated. They really want it carefully monitored and they want to have trust in the bodies which are engaged in this process of advising government. Establishing that trust is one of the challenges facing a Commission like mine.
(Ruth Deech) Britain is a much less religiously polarised country than many of the ones that you may have visited in your quest. Religious issues on the whole were not brought to us. The other thing is that at least one gets a female point of view in the use of committees like ours. I think it is no coincidence that all three of us here are female and that way you will get the female voice which I do not think has been very frequently heard in Parliament in its discussions on genetics and reproductive matters.
55. Helena, in December 1999, the HGC took over the functions of the HGAC, the ACGT and the AGSAG. You now co-exist with the HFEA. Obviously, there is a great deal of working between organisations and I suppose the fact that you took over the functions of all those separate august bodies demonstrates that. We have heard today that there is a great deal of work that goes on between you. Do you think there is any danger in that? Do you think there may be too much overlap of your working or not?
(Baroness Kennedy of the Shaws) No. I think sense had to be made of all those different committees. There you were, having to unravel areas of overlap and bringing a Commission into being was a very sensible move. Even still, there are bodies out there working on this who are making a very valuable contribution to the thinking on these processes, whether it is this Committee or a Committee in the House of Lords, the Nuffield Foundation. Lots of different bodies are here with their fingers in this area. I am not alarmed and I do not feel there is too much overlap. We are quite clear about where the overlaps exist and we have got them fairly well worked out. We collaborate in a sensible way. We are fairly distinct and I am happy we are so distinct because it means some of the more difficult issues are over here with my colleagues to my left.
(Suzi Leather) It is a benefit to the HFEA that the HGC can have a bigger look, and does have a good resource base for doing the public consultation, because our primary focus is regulation. Of course we have a kind of advice role as well and that is important. We will always be closer to patients and closer to some of the health consequences. We will always have people knocking at our door saying, "We want to license this. Can we have a licence for this?" but it is very helpful to have the HGC with its distinct role.
Would you be prepared, on your international dimension, to meet with visiting committees from abroadfor instance, the German Ethics Committee or Council? Would you be prepared to see them if they came over and wanted to see you?
(Suzi Leather) Absolutely. Our door would always be open.
(Baroness Kennedy of the Shaws) Absolutely.
57. Baroness Kennedy, do you think your resources are adequate for the job you are being asked to do?
(Baroness Kennedy of the Shaws) Never!
58. I have a figure here of £250,000. I do not have a figure for how many staff that employs so perhaps you could tell us how many staff are employed and what that figure of £250,000 should really be. That is the 2000/01 figure.
(Baroness Kennedy of the Shaws) We have a wonderful secretariat. The bulk of our money goes into having meetings and taking them to different parts of the country and having them in public. We would like to do that even more and have bigger public meetings where you can have this real public engagement. As was said earlier by Suzi, for that you really do need resourcing. We could do that even better and we are acquiring some skill at it but we would like to do it even more effectively and perhaps even more frequently. We do not have the money so I would like more resourcing, please. There are three members of staff from the Department of Health, one from the Office of Science and Technology, so four staff members on our secretariat.
59. Have you ever asked for more money?
(Baroness Kennedy of the Shaws) I am one of those people who, whenever I see a minister, never misses the opportunity of saying that we could do with more money.