Minutes of the Council meeting held on 29 March 2000
Fri, 28 April 2000
Council (00) 2nd Meeting
NUFFIELD COUNCIL ON BIOETHICS
Minutes of the Meeting held at 28 Bedford Square London WC1B 3EG
on 29 March 2000 at 10.30 am
PRESENT
Professor Ian Kennedy (Chairman)
Professor Martin Bobrow (Deputy Chairman)
Professor Tom Baldwin, Mr Derek Osborn, Professor Sir Kenneth Calman, Professor Catherine Peckham, Professor Duncan Forrester, Professor Herbert Sewell, Mrs Rebecca Howard, Professor Albert Weale, Professor John Ledingham
APOLOGIES
Lady Hornby, Professor Brian Heap, Mr Nick Ross, Professor Martin Raff and Dr Sandy Thomas
SECRETARIAT
Susan Bull, Julia Fox and Yvonne Melia.
Council was reminded that they would be joined at lunch-time by Roger Highfield, Science Editor of The Daily Telegraph
MINUTES OF (00) 1st MEETING
1 These were agreed as an accurate record of the previous meeting.
MATTERS ARISING
2 Meeting with Sir Paul Nurse, Director General of the Imperial Cancer Research Fund: The Chairman reported this would take place on 11 May, 2000. It was noted that Professor Sir Kenneth Calman had joined the board of the ICRF in April.
CHAIRMAN'S ITEMS
ANNUAL REVIEW/REPORT
3 The final draft of the Annual Review/Report was tabled. Council members were asked to return any proposed amendments to the draft to the Secretariat by 7 April. When the final draft was complete, the Report would be signed off by the Chairman and Deputy Chairman, before being printed.
BUSINESS PLAN
4 The Chairman was pleased to report that the Nuffield Foundation would be making an additional room available in the Bedford Square building so that a staged expansion of the Secretariat could begin to take place. Once notification of the Wellcome response had been received, recruitment for the senior position and the secretary referred to in the Business Plan would be initiated. Two Council members would be asked to be part of the interviewing panel for the senior appointment.
MEMBERSHIP
5 The Chairman reminded Council that a member with legal expertise and a member with experience of industry were still being sought.
DIRECTOR'S REPORT
FOLLOW-UP: GM CROPS Council (00) 08
6 The Secretariat and former Working Party members continued to receive positive feedback about the Report at meetings. Work was continuing on the 16+ version of the Report and it was hoped that it would be launched in September at the British Association's Creating Sparks Festival.
ETHICS OF HEALTHCARE-RELATED RESEARCH
IN DEVELOPING COUNTRIES
7 The Chairman of the Working Party, Sir Kenneth Calman reported that there had been a productive first meeting. He noted that a number of organisations were identifying ethical principles and guidance for healthcare-related research, but that the guidance was not always appropriate for developing countries or was contradictory. There had been considerable interest in the discussion paper posted on the website and other organisations had commented on the use of the paper as a basis for discussion.
8 It was important to maintain links with international bodies such as the World Medical Association and Council for International Organizations of Medical Sciences who were considering these issues, as well as organisations conducting research in developing countries. The importance of holding a Working Party meeting in Africa was agreed. There was the possibility of holding smaller meetings in other countries in conjunction with national organisations such as the Hastings Center and National Bioethics Advisory Commission in the US.
9 At the next Working Party meeting, the first chapter outlines would be considered. It was agreed that it would be appropriate to commission a short piece outlining the evolution of ethics in relation to medical research in developing countries.
STEM CELL THERAPY: THE ETHICAL ISSUES Council (00) 09
10 The paper would be published on Thursday 6 April. Hard copies would be available, but would not be professionally printed. The paper and press release would be posted on the website.
11 The paper was the Council's first attempt at a 'rapid response' to a topical issue. A small roundtable meeting was held and a first draft of the paper was produced by the Secretariat for comment. The paper was circulated via email and went through several substantial redrafts, incorporating comments from Roundtable members, Council and peer reviewers. Roundtable and Council members had suggested that some of the issues raised during the redrafting would have been best addressed at a second or third meeting of the Roundtable group. Historically, the Council had chosen not to engage in "rapid response" because of its commitment to producing reports which were the product of rigorous and well argued analysis.
12 Council agreed that the final version of the Report could be signed off by the Deputy Chairman, who would take account of the comments received. The members of the Roundtable and Secretariat were thanked for their hard work.
13 Council concluded that there were situations where a case could be made for "rapid responses". Council should do so, however, very selectively. The principal criteria were:
- the issue examined must be real and important;
- the issue must be one as regards which the Council could exert influence on policy formation;
- the Council would not be duplicating existing work;
- the Council would not be merely endorsing existing views;
- resources must be available;
- the timescale should be up to 6 months;
- 3 meetings should be agreed at the outset;
- there should be 4-6 members, half of them drawn from Council.
14 As in all other published statements, it is Council, rather than members of the Roundtable, who would have to sign off the final version.
MAIN BUSINESS
FORWARD LOOK SEMINAR 2000 Council (00) 10
15 Yvette Cooper MP, Parliamentary Under Secretary of State for Public Health had proposed a meeting with the Chairman and Council members, instead of joining Council for dinner. Council agreed not to limit invitees to government and others were identified.
16 It was important to 'scan the horizon' to determine future work. Council members would be invited to lead on specific issues and papers would be produced to support the discussions.
17 It would be useful for Council to look back over its work to identify lessons to be learned. It was important to consider the work of other bodies, including the Human Genetics Commission and to monitor international developments and the Council's interaction with other national and international bodies.
WORKING PARTY ON GENES AND BEHAVIOUR Council (00) 11
18 It was agreed that a strong, impartial Chair was required for this controversial topic. Proposed members of the Working Party were discussed. Further nominations, including that for Chair, were to be given to the Secretariat.
19 Following discussion of the proposed terms of reference, a number of amendments were suggested. It was agreed that the Deputy Chairman and Director would revise the terms of reference. Footnotes could be added to clarify terminology where required.
WORKSHOP ON SAFETY/RISK Council (00) 12
20 The tabled document on risk from Tom Baldwin and Albert Weale's paper were discussed. Consideration was given to how and when this topic should be considered in greater depth. It was agreed that Nick Ross, Albert Weale and Tom Baldwin should draft a paper for the June meeting. Consideration was given to whether risk raised sufficiently important or novel ethical issues. If Council considered the topic it would need to address specific ethical issues, such as the use of the precautionary principle, rather than cover 'well-trodden ground'.
21 The importance of this topic needed to be judged alongside the suggestion that the topic of ownership of the human genome should also be considered. Both topics could not be taken forward simultaneously and a decision needed to be taken about whether to examine either or both topics, and in which order.
OWNERSHIP OF THE HUMAN GENOME Council (00) 13
22 It was agreed that the topic of safety and risk was unlikely to change substantially in the near future. By contrast, if the Council was to make a useful contribution concerning ownership of the human genome it would have to be soon. There was some discussion of whether it was already too late. It was noted that there was significant confusion about the legal status of patents on genomic information and it was agreed that the Council could inform discussion on the moral aspects of patenting DNA. It was important to consider ownership of the human genome and guidance would be sought as to how best an analysis of the ethical issues could inform policy makers and the courts. The Chairman and Deputy Chairman would discuss with the Director how to take this forward.
PRIVACY AND CONFIDENTIALITY
23 It was agreed that this was an important topic for the Council to consider in the future, following consideration of patenting and risk.
ANY OTHER BUSINESS
3rd GLOBAL SUMMIT OF THE NATIONAL BIOETHICS COMMISSIONS
24 The organisation of the Summit was progressing well and sponsorship had been secured from the Department of Health and two pharmaceutical companies. Thanks were due to John Ledingham's wife who had suggested the venue for the summit. A reception might be held at the Nuffield Foundation building for the delegates to the Summit.
HGC PUBLIC MEETING AND CONSULTATION
25 Details of the public meeting on 10 April were tabled.
ITEMS FOR INFORMATION Information (00) 07-(00) 09
26 The information papers were noted and the Secretariat was congratulated on the success of the website.
FUTURE MEETING DATES FOR 2000
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
Last Updated Mon, 7 June 2004