Minutes of the Council meeting held on 19 January 2000
Fri, 18 February 2000
Council (00) 1st Meeting
NUFFIELD COUNCIL ON BIOETHICS
Minutes of the Meeting held at 28 Bedford Square London WC1B 3EG
on 19 January 2000 at 10.30 am
PRESENT Professor Ian Kennedy (Chairman)
Professor Tom Baldwin, Lady Hornby, Professor Martin Bobrow, Professor John Ledingham, Professor Sir Kenneth Calman, Professor Catherine Peckham, Professor Duncan Forrester, Mr Nick Ross, Professor Brian Heap, Professor Herbert Sewell, Mrs Rebecca Howard, Professor Albert Weale
APOLOGIES
Mr Derek Osborn, Professor Martin Raff
SECRETARIAT
Dr Sandy Thomas, Susan Bull, Julia Fox and Yvonne Melia.
The Chairman welcomed new members of Council and Professor Sir Kenneth Calman who was joining the Council for the period of his Chairmanship of the Working Party on the ethics of clinical research in developing countries.
Council was reminded that they would be joined at lunch-time by the three retiring founder-members of Council.
MINUTES OF (99) 4th MEETING
1 These were agreed as an accurate record of the previous meeting.
MATTERS ARISING
2 Government Review of Biotechnology: The Chairman reported that the membership of the new Human Genetics Commission (HGC) had been announced (item 5.2 on the agenda) and that he would contact the chair, Baroness Helena Kennedy, with a view to opening a dialogue with the Council. It was noted that the chair and membership of the Agriculture and Environment Biotechnology Commission had yet to be announced.
CHAIRMAN'S ITEMS
ANNUAL REVIEW/REPORT
3 The Chairman reminded Council that an annual report had not been produced on a regular basis and that this situation was now being addressed by the Secretariat. The recent draft circulated during December was a review of the Council's work over several years. He thanked members for their prompt response to the draft. Comments would be incorporated and the report published in March. One thousand copies would be distributed. The suggestion of a shorter report with a folder inside containing summaries of the Council's reports would also be considered.
BUSINESS PLAN Council (00) 01
4 Agreement had now been reached with the Nuffield Foundation and the MRC for a phased expansion. The proposed budget for 2000 had been accepted and one for 2001 provisionally agreed. A move to new accommodation was planned for 2001. A new application for funding would be prepared for submission to the Wellcome Trust by the 1st of February.
5 There was some discussion about the response of the sponsors to the Council's proposed work in the area of education. It was agreed that there was a need to keep the terms of reference, which referred to public debate and understanding, firmly in sight. The Director reminded Council that its previous activities in education had lapsed somewhat as more attention had been given to producing reports over an 18 month period. The request for an additional junior staff member in the Secretariat was intended to address this gap.
6 It was agreed that the Council must retain its independence in deciding its agenda. Although there was now a new policy landscape, with two new Commissions, the Council's role was broadly the same.
MEMBERSHIP
7 A new member to replace Dr Brian Newbould was needed.
8 Deputy Chairman: Professor Martin Bobrow agreed to serve as Deputy Chairman, an appointment which would strengthen Council's constitutional structure. It was agreed that Council would consider at its June meeting the establishment of a small number of sub-committees on, for example, finance, membership and new topics. These groups would meet regularly and report back to the Council.
DIRECTOR'S REPORT
FOLLOW-UP: GM CROPS
9 The Chairman reminded Council that, prior to the Director's appointment, no formal follow-up process was in place after a report had been published. A clear procedure was now in place. The Director reported on the wide impact that the GM Crops report had had, both nationally and internationally, which was reflected in the number of invitations she, and members of the Working Party, had received to speak at conferences and seminars in the UK, Europe and further afield. The report was also proving to be highly relevant to issues concerning GM trees in the USA.
ETHICS OF CLINICAL RESEARCH Council (00)02
IN DEVELOPING COUNTRIES
10 The discussion paper published in November which examined the topic for the Working Party, had been very frequently downloaded from the Web. The Council was working closely with other groups on the topic, including the NIH, the US NBAC, CIOMS and others. The first Working Party meeting would take place over the two days following the Council meeting. A member with expertise in anthropology was still to be appointed. Only five meetings had been arranged for the first year, because the travelling costs of members drawn from overseas were substantial.
11 The Chairman of the Working Party, Sir Kenneth Calman, said how delighted he was to be Chair of a Working Party with such a distinguished membership. The topic was likely to prove controversial and some important recommendations would emerge. Sir Kenneth would be invited to make use of a standing item on the Council's agenda for reporting back on progress.
12 There was then some discussion about the scope of the Working Party. Although the topic was largely about research in developing countries being undertaken by people from developed countries, it was important not to ignore research being done by the developing countries themselves.
WORKSHOP ON GENES AND BEHAVIOUR AND Council (00) 03
WORKING PARTY
13 A Workshop had been held in November at which there was unanimous agreement that the Council should be urged to establish a Working Party. It was agreed that draft terms of reference should be prepared by the Director and Deputy Chairman. The membership and Chair of the Working Party needed to be considered to allow the first meeting to be held in June. Suggested areas of expertise, additional to those mentioned by the Workshop, included psychology, computing and parallel computing.
14 The need for a range of viewpoints within the Working Party was agreed to be particularly important, given the controversial nature of the topic. Expertise in areas such as forensic psychiatry, psychology, social services, the probationary service, fostering and adoption, parenting and extreme behaviour problems was also considered. The Chairman reminded Council that while particular expertise was important, a quality of reasoning and understanding which could address the socio-political and moral implications of research in this area was equally if not more important. What was needed was wise people with a degree of expertise. The Deputy Chairman reminded Council that the focus of the Workshop was genetic behaviour within the normal range and not pathological behaviour. Further suggestions for names and areas of expertise would be solicited from Council. These would be circulated, along with the draft terms of reference, with a view to discussion and decision at the March meeting.
STEM CELL THERAPY: THE ETHICAL ISSUES Council (00) 04
15 A Round Table meeting had been held on this topic in September. The Director had subsequently presented the draft conclusions to the CMO's Group. The paper was now being revised for publication, in the light of comments from peer reviewers. The CMO's Group expected to publish their report in March.
WORKSHOP ON SAFETY/RISK
16 It was agreed that a short paper to provide a framework for discussion by Council would be prepared for the March meeting.
MAIN BUSINESS
FORWARD LOOK SEMINAR 2000
17 The Chairman explained the aims of the Council's 'Away-day' for the benefit of new members. The first meeting, which had taken place last year, had worked well and proved to be a valuable exercise. The Chairman had also invited Professor Linda Nielson who has just retired as Chairman of the Danish Council of Ethics, and was pleased to report that Professor Nielsen had agreed to speak in the afternoon about the role of the Danish Council in policy making and its experiences of engaging with the public.
18 In the morning session of last year's meeting, discussion had focused on the process which underlies the Council's work. The Chairman suggested that at this year's meeting, the morning session should consider the content of the Council's future work. This would be an exercise which 'scanned the horizon' for future topics and considered which areas examined in the past needed revisiting. It was agreed that the Secretariat would circulate details of those topics which the Council had already examined.
ANY OTHER BUSINESS
OWNERSHIP OF THE HUMAN GENOME
19 The long-standing tension arising from the conflicts between private and public 'ownership' of the human genome had increased recently. In particular, developments involving the US genomics company Celera were causing fresh concerns. The Council had kept a watching brief on the patenting debate: a workshop on intellectual property rights (IPR) and the human genome was planned and subsequently deferred in 1999. The question now was whether the Council should reconsider its decision and undertake an initiative in the year 2000.
20 The Director pointed out that there was provision in this year's budget for a small workshop which could be directed towards this topic. It was important to be clear about what such a meeting might achieve. At the same time, the risk of not examining the issues at all might prove to be unwise in the longer term. Some analysis from the Council might also prove useful in helping the public understand the complexity of the topic. It was agreed that a paper which set out the issues and which considered the likely outcomes of a workshop would be prepared for consideration at the March meeting or ideally, before.
BIOETHICS SUMMIT Council (00) 06
21 The 3rd Global Summit of National Bioethics Commissions will be held in London in September 2000. The Chairman, Baroness Kennedy of the HGC and Dr Michael Wilkes of the BMA will be the UK co-Chairs. The questions posed by the organising committee of the Summit in Council (00) 06 were considered. There was broad support for institutionalising the Summit on a permanent basis. Such an arrangement would encourage an exchange of views between different commissions and similar bodies.
HUMAN GENETICS COMMISSION
22 The terms of reference of the HGC were briefly discussed. There was no indication that the remits of the HGC and the Council would be in conflict. The workplan of the HGC was yet to be decided and the HGC Secretariat had invited the Council and others to submit suggestions. The broad topic of intellectual property rights was proposed.
23 WHO Guidelines: the Proposed International Guidelines on Ethical Issues in Medical Genetics and Genetic Services were available from the Secretariat.
24 Office of Science & Technology: Consultation on the Review of Guidelines on the use of Scientific Advice in policy making: this had been circulated to Council for comment. The Chairman thanked members for their helpful comments. A response would now be prepared by the Secretariat and copied to Council.
25 Foresight (Healthcare): a new brochure summarising the main areas to be considered by the Foresight Healthcare Committee was available from the Secretariat.
ITEMS FOR INFORMATION Information (00) 01-(00) 06
26 These were noted.
FUTURE MEETING DATES FOR 2000
Wednesday 29 March
Wednesday 21 June
Wednesday 11 October
all commencing at 10.30 am, followed by lunch
FORWARD LOOK SEMINAR
Wednesday 17 May
Full-day meeting at the Royal Overseas League followed by an evening dinner (Council (00) 05)
Last Updated Mon, 7 June 2004