Minutes of the Council meeting held on 17 October 2001
Thu, 6 December 2001
Council (01) 4th Meeting
NUFFIELD COUNCIL ON BIOETHICS
Minutes of the Meeting held at 28 Bedford Square London WC1B 3JS
on 17 October 2001 at 10.30 am
PRESENT
Professor Ian Kennedy (Chairman)
Professor Martin Bobrow (Vice-Chairman), Professor Tom Baldwin, Professor Catherine Peckham, Professor Sir Kenneth Calman, Professor Bob Hepple, Professor Sir Brian Heap, Professor Herbert Sewell, Lady Hornby, Dr Alan Williamson, Professor John Ledingham, Mr Derek Osborn, Professor Dame Marilyn Strathern
APOLOGIES
Professor Duncan Forrester, Professor Bob Hepple, Mrs Rebecca Howard, Mr Nick Ross and Professor Albert Weale
SECRETARIAT
Dr Sandy Thomas, Susan Bull, Tor Lezemore, Yvonne Melia and Julia Fox
The Chairman reported two items of news from the Secretariat. Susan Bull, Assistant Director would be leaving the Council in the Spring to study for a PhD. Nicola Perrin would join the Secretariat at the end of October as Public Liaison Officer. He reminded members that this would be the last formal meeting for three members of the Council, Lady Hornby, Professor Sir Brian Heap and Derek Osborn. They would, however, join the Council for a farewell lunch after the Council meeting on 30 January 2002.
MINUTES OF (01) 3rd MEETING
1 It was agreed that the Minutes were an accurate record of the previous meeting.
MATTERS ARISING
2 Proposed 2nd joint meeting with HGC: The HGC had now responded to the Director’s letter suggesting that they might wish to host the next joint meeting. They had responded with suggested dates of 8 November, 13 December 2001 and 10 January 2002. The Chairman, Professor Bobrow, Professor Baldwin, Professor Sewell and Dame Professor Marilyn Strathern had attended the first meeting. The Secretariat would liaise with members to select a date.
3 Nuffield Council on Bioethics Website: The Council’s website was set up three years ago and had expanded rapidly, attracting a large number of visitors. The site was now in the process of being restructured so as to be better organised and capable of being expanded more efficiently. The site would be also be re-designed, so that it was clearly distinguishable from the site of the Nuffield Foundation. Copies of the plans for the redesigned site were available from Susan Bull if the Council members wished to comment on them.
CHAIRMAN’S ITEMS
MEMBERSHIP
4 The Chairman was pleased to report that Professor Sir Kenneth Calman had accepted the invitation to serve on the Council and would join in March 2001, when the Report on the ethics of healthcare-related research in developing countries was completed. The Chairman stated that he would write to Council members asking for further names over the next two weeks, which could then be considered by the Council’s sub-group. In making suggestions Council should bear in mind that a balance was required in gender, age and ethnic origin.
DIRECTOR’S REPORT
PROPOSAL FOR FUNDING: PROGRESS REPORT
Council (01) 17
5 The Director was delighted to report that the Council had been successful in its bid for funding for the next five years. The relationship with the funders would assume a more formal structure, with two meetings a year. The comments from referees, circulated in a supporting paper, on the quality of the Council’s work were very encouraging.
WORKSHOP ON ETHICS AND RESEARCH INVOLVING ANIMALS
Council (01)18
6 The Director reported that the Secretariat had now made substantial progress in planning the Workshop on the ethics of research involving animals. This would be held on 28 November and members were asked to comment on the draft programme and the list of people who had been invited to attend.
7 It was agreed that additional invitations would be made to individuals who were known to make useful contributions to such debates. It was also agreed that school teachers should be represented as they were an important group who should be involved if the topic were carried forward to be considered by a Working Party.
WORKSHOP ON ETHICS AND PHARMACOGENETICS
Council (01) 19
8 This Workshop would take place on 5 December. Members were asked to comment on the draft programme and the list of people who had been invited to attend. Expertise in the area of drug licensing and regulation was also required. Although the Workshop would be addressing the issues from a UK focus, it was agreed that the different perspectives of the US and of developing countries should be aired.
PROPOSED WORKSHOP/ROUND TABLE DISCUSSION
ON SCIENTIFIC INTEGRITY
Council (01) 20
9 Preliminary work had been undertaken by the Secretariat to identify key questions in this area. A paper on the topic would be prepared for the meeting in January. The Chairman invited members to consider how the topic should be taken forward. There was broad support for the topic to be taken forward as a Workshop. Although other bodies had addressed some of the specific issues, there might be a role for the Council in bringing together a range of broader issues. However, it was important to identify well-defined areas to which the Council could make a substantial contribution. It was agreed that the claim of confidentiality in relation to scientific information and its impact on public policy was one such area. Suppression of information, whether for commercial or security reasons, was an important issue which deserved attention from a body such as the Council. There were legitimate questions about whether to release information into the public domain and who ought to decide this. One role of government was to provide measures to secure the integrity of scientific information presented to the public particularly by companies.
10 There was some discussion about the Council’s role: whether to propose codes of guidance, or to identify principles on which guidance could be based. The Chairman emphasised that the role of the Council was to identify those principles which should guide any code of practice. It was agreed that a paper which developed the discussion would be circulated before the January meeting with a proposed timetable for taking the study forward.
PROPOSED WORKSHOP/ROUND TABLE ON
DISCUSSION ON END OF LIFE/START OF LIFE
Council (01)21
11 This topic was identified at the Forward Look meeting as a possible candidate for the future work programme. The next step would be to consider it alongside existing commitments including the two Workshops on animal research and pharmacogenetics respectively. The Chairman invited members to consider whether the two areas - end of life - and start of life – should be considered as one topic or separately.
12 There was support for both approaches. There were sound reasons for considering the topics comparatively which might be highly innovative. One view was that the dependency of individuals at the start and end of life was a common theme. Others took the view that the concept of the right to reproduce was particularly complex and should be considered separately. A number of other bodies were considering issues surrounding reproductive choice. It was agreed that a paper developing the discussion would be prepared for the January meeting.
MAIN BUSINESS
ETHICS OF HEALTHCARE-RELATED RESEARCH
IN DEVELOPING COUNTRIES
Verbal report
13 The Working Party had had its final meeting on 19-20 September and the report was currently being redrafted in the light of the decisions made at that meeting. A draft of the report would be circulated to Council in late October or early November for approval, before it was placed on the web for one month for comment. The comments received would be circulated to the Working Party, which would decide whether any amendments would be made to the report. It was important that it was made clear that the draft report was a work in progress, and the responsibility of the Working Party, rather than Council, when it was placed on the web. The process of placing the report on the web was to be treated as an experiment, which, if successful, could be replicated for future Working Parties or Round Table discussions.
14 The final report would be circulated to Council for discussion and approval at a Council meeting. As the Report on Genes and Human Behaviour was also due to be discussed at the January meeting, an additional meeting of Council would need to be scheduled to discuss one of the two Reports. It was anticipated that the Report would be launched in March. The ethics of healthcare-related research in developing countries was a difficult topic on which strong views were held. It was noted that the Chairman of the Working Party had planned to outline the Report’s conclusions at the Third Global Forum on Bioethics in Research in The Gambia which would now be held in February 2002 at the earliest.
WORKING PARTY ON
GENETICS AND HUMAN BEHAVIOUR: THE ETHICAL CONTEXT
Council (01) 22
15 The Assistant Director, Tor Lezemore, reported that the draft Report would be presented to the Council at their January meeting or at an additional meeting (see paragraph 14 also). It was noted that Members of the Working Party and the Secretariat were to make a fact-finding visit to the Hasting Center in the US during November.
ROUND TABLE ON THE ETHICS OF PATENTING DNA AND PROTEINS
Council (01) 23
16 The Director presented a tabled paper in addition to the draft paper already circulated. The draft paper should be seen as ‘work in progress’ and some duplication remained in the text. However the paper had been circulated to facilitate discussion of the substantive issues. The Director reported that two recent meetings had been held with different members of the Round Table. The Director was seeking views as to what the recommendations might be. The draft paper now needed to be re-circulated to the members of the Round Table. Draft recommendations which then emerged would be discussed at the proposed Workshop.
17 Detailed discussion of the tabled paper then followed. It was agreed that it was crucial that all members of the Round Table meet and discuss a number of the outstanding contentious issues. It was noted that this had proved to be a most difficult topic for the Council and that many external experts had been unable to resolve their differences on basic points. It was necessary to bear in mind that certain existing legal arrangements were already in place. The challenge was to find a way forward which took account of these arrangements, given that the purpose of establishing the Round Table discussion was to enable the Council to formulate advice to those who would be applying the current legal framework.
TO REPORT
COUNCIL’S 10TH ANNIVERSARY CELEBRATIONS
18 Prefaces: It was agreed that the prefaces that had been commissioned should be published.
19 Prospect questions: After some modification, the text of the questions was agreed.
ANY OTHER BUSINESS
20 Consultation on text of the draft additional protocol to the Council of Europe Convention on Human Rights and Biomedicine on Biomedical Research: the Chairman brought the consultation to the Council’s attention.
21 The Chairman drew members’ attention to the meeting dates for 2002, including the Forward Look Seminar on 16 May which would be held at the Royal Society of Arts.
22 Over lunch the Chairman engaged the Council in a discussion about the format and location of the proposed out-of-London meeting. Possible locations included Cardiff, Glasgow and Edinburgh (in association with the Roslin Institute). There was strong support for the first meeting to be held in Scotland. It was agreed that the meeting should not be a meeting of the Council or of a Working Party.
23 Finally the Chairman extended his thanks to Lady Hornby, Professor Sir Brian Heap and Derek Osborn for their outstanding and unstinting service to the Council. He looked forward to having the opportunity of showing the Council’s appreciation for their contribution at the lunch on January 30, 2002.
Last Updated Mon, 7 June 2004