Minutes of the Council meeting held on 28 March 2001
Wed, 16 May 2001
Council (01) 2nd Meeting
NUFFIELD COUNCIL ON BIOETHICS
Minutes of the Meeting held at 28 Bedford Square London WC1B 3JS
on 28 March 2001 at 10.30 am
PRESENT
Professor Ian Kennedy (Chairman)
Professor Martin Bobrow (Deputy Chairman)
Professor Sir Kenneth Calman, Professor Tom Baldwin,
Professor Catherine Peckham, Mrs Rebecca Howard,
Professor Martin Raff, Professor John Ledingham,
Professor Herbert Sewell, Derek Osborn, Professor Albert Weale,
Professor Marilyn Strathern, Dr Alan Williamson
APOLOGIES
Professor Bob Hepple, Professor Duncan Forrester,
Professor Brian Heap, Lady Hornby and Nick Ross
SECRETARIAT
Dr Sandy Thomas, Susan Bull, Tor Lezemore, Julia Fox and
Maria Gonzalez-Nogal
The Chairman welcomed Maria Gonzalez-Nogal, the new Information Assistant within the Secretariat who was attending the meeting as part of the Nuffield Foundation's induction process. Mr Harry Cayton, Executive Director of the Alzheimer's Disease Society would be joining the Council at lunch.
MINUTES OF (01) 1st MEETING
1 It was agreed that the Minutes were an accurate record of the previous meeting.
MATTERS ARISING
2 The Chairman reminded Council that it had been agreed that one of the four annual Council meetings would be held outside of London. He reported that Edinburgh, Cardiff, Birmingham, Leeds were under consideration as possible locations and that the first such meeting would be held in 2002.
3 Forward Look: The programme for the meeting would be considered under agenda item 2.2.
4 Stem Cell Therapy: The Director would report on follow up to the Council's Discussion Paper under agenda item 3.1.
5 POST: The Chairman drew the Council's attention to the recent paper by the Parliamentary Office of Science and Technology (POST) on opening up a dialogue between science and the public. It was agreed that the paper would be circulated so that it could assist discussion about this topic at the Forward Look meeting.
CHAIRMAN'S ITEMS
PROPOSED MEETING WITH BUSINESS
COMMITTEE OF THE HUMAN GENETICS COMMISSION (HGC)
Council (01) 05
6 At the meeting with Yvettee Cooper MP, Parliamentary Under Secretary of State for Public Health, it had been agreed that meetings should be held twice a year between the Secretariat and relevant officials from the Department of Health. The first of these meetings was held on 8 March 2001 and had been very productive.
7 At the meeting it was agreed that an annual discussion between the Business Committee of the Human Genetics Commission and a core group of Nuffield Council members would be useful and this would take place 11.00am on 10th May, followed by lunch. Officials from the Department of Health suggested that the HGC would particularly value a discussion of the Council's work on patenting in genomics and proteomics. The HGC was currently engaged in a study on issues of confidentiality and privacy and it was agreed that the occasion would present an ideal opportunity for an exchange of information between the two organisations. The Secretariat would draw up an agenda in consultation with the HGC. The Council would be represented at the meeting by the Chairman, Deputy Chairman, Professor Albert Weale, Professor Herbert Sewell, Professor Tom Baldwin and Professor Marilyn Strathern.
FORWARD LOOK SEMINAR
Council (01) 06
8 The Chairman reminded members that the programme for the morning session had already been agreed. Professor Ian Hargreaves would address the Council on the theme of his recent report 'Who is misunderstanding whom?' Two sessions had been suggested for the afternoon: the first would consider the Council's future role in education; and the second would reconsider future work. This proposal was agreed. Papers for both sessions would be prepared by the Secretariat.
DIRECTOR'S REPORT
STEM CELL THERAPY : THE ETHICAL ISSUES
9 The Director reported that the House of Lords had established a committee to consider the implications of the development of human stem cell technology. The press release which announced the membership of the committee would be circulated to council members with the minutes. It appeared that the committee would be addressing similar issues to those covered by the CMO's report. While the House of Lords had voted in favour of the proposed amendment to the HFE Act to permit research on human stem cells for therapeutic purposes, the approval was made subject to the establishment of the committee.
10 There had been continuing interest in the Council's paper on human stem cells. The French Ministry of Research had asked for permission to reproduce the report in a government publication and the Director would be giving a presentation on the topic at the forthcoming meeting of the Human Genome Organisation (HUGO) in Edinburgh. With regard to the issues raised by developments in adult stem cell research, it was agreed that the Council should continue to keep a watching brief.
REPORT OF THE EXTERNAL RELATIONS SUB-GROUP
Council (01) 07
11 The External Relations sub group met for the first time on 13 February 2001. It was agreed at the meeting that the main role of the sub group was to advise the Council on the development of a more structured approach to its relations with other organisations, particularly those overseas. Previously, the Council had been actively represented at the International Bioethics Committee, UNESCO by David Shapiro, Executive Secretary (1991-97). More recently, the Director had developed a close working relationship with the US National Bioethics Commission (NBAC). However, a formal strategy had not been in place and the Council had tended to be reactive, responding for example, to requests for presentations and advice.
12 There was now more scope for co-operation with other bodies, particularly within continental Europe. In general, UK relations with other European bioethics organisations had been patchy in the past and needed to be improved. The Council was well-placed to take a lead on developing external relations in continental Europe. The appointment of the Information Officer would enable matters to be handled in a more systematic manner. It was important that the Council was selective in its activities and focused on those bodies where it could exercise influence. The European Commission and the World Health Organisation were two obvious examples. As regards the US, it was important for the Council to develop close links with non-governmental bodies, such as the Hastings Centre and Professor Alex Capron's Centre at the University of Southern California.
13 The Chairman then summed up by emphasising that the Council needed to move from its previously informal approach to a more formal strategy. An effort would be made to appoint members and peer reviewers of working groups from continental Europe and improved relations with the EC, the European Parliament, WHO and the French, German, Danish and Dutch bioethics commissions would be developed. Council members were invited to pass on any points of contact in relevant organisations to the Secretariat. An invitation to the Council to co-organise the programme of the 4th Global Summit in Brazil was noted.
MAIN BUSINESS
ETHICS OF HEALTHCARE-RELATED RESEARCH
IN DEVELOPING COUNTRIES
Council (01) 08
14 Professor Sir Kenneth Calman thanked Council for its comments on the draft report. He reported that the fact finding meetings in India and the US had been extremely helpful. He commented on the latest version of the Declaration of Helsinki and drew members' attention to the revisions to paragraphs 29 and 30 which concerned standards of care and what should be provided after research is over. It was important that the Working Party considered this part of its report very carefully before finalising its recommendations. The draft text of the Helsinki Declaration would be circulated to Council with the minutes.
15 The status of the Helsinki Declaration was discussed. The revised version of the Declaration had been drafted by the WMA, the BMA had been a signatory, and the final text had been agreed by the national medical associations in October 2000. It was noted that the revised version of the Declaration also had implications for research into healthcare in developed countries such as the UK.
16 The Chairman invited members to comment on the list of proposed peer reviewers and to make additional suggestions. It was important that the choice of reviewers reflected the global nature of the issues. It was agreed that additional reviewers from South America and/or Thailand were needed. The Chairman, Deputy Chairman and Professor Calman would sign off the final list of peer reviewers.
17 A draft of the National Bioethics Advisory Commission report had been placed on the web for comment. The Director and Professor Calman proposed that the Council's report be treated in the same way. After discussion, the Council agreed that the final report, which it had signed off should be placed on the Web for comment. Comments on the report would be considered by the Working Party and any amendments would need to be approved by Council before publication. All comments received could be published electronically. It was also agreed that a conference to follow up the report six to 12 months after publication would be valuable.
WORKING PARTY ON GENETICS AND
HUMAN BEHAVIOUR: THE ETHICAL CONTEXT
Council (01) 09
18 The Director reported that there had been a high level of interest from the media in the launch of the Working Party's consultation document. The reporting had been balanced and some responses had already been submitted. On this occasion, early contact with media had proved to be a worthwhile strategy. Drafting of chapters for the report was already in progress.
ROUND TABLE ON THE ETHICS OF PATENTING DNA
AND PROTEINS
Council (01) 10
19 Drafting of the Discussion Paper had moved slowly for a variety of reasons. The 3rd draft had been sent to Council for information only. It was hoped to plan a meeting during April or May to finalise recommendations. The Secretariat had scheduled the paper for publication in June but the timing was being kept under review. Although the paper needed a great deal more work, one member commented that it was nevertheless very accessible for a non-specialist as well as being thought-provoking.
20 With regard to the timing of the paper, it was agreed that the Autumn would be acceptable. The Council had been fortunate with the timing of the study. It promised to be the first seriously reflective paper and it was therefore important that it was not published hastily. The paper would benefit from wide consultation, particularly as the Round Table group was not representative of all the interested parties. In particular, patent officers needed to be consulted.
PROPOSALS FOR FUTURE WORK
The Director suggested that there was a need for the Council to reflect further on the choice of new topics. It was agreed that a paper which developed ideas already suggested would be prepared for the next Council meeting.
PROPROSAL FOR FIVE-YEAR FUTURE FUNDING Council (01)11
21 The bid for funding would be submitted on March 29. Rebecca Howard for the Finance sub group had reviewed the budget. Summary documents of the budget were tabled. Direct costs would be split between the three sponsors and the Nuffield Foundation would cover all of the indirect costs. The process for the preparation and submission of the bid for funding had been agreed with the three sponsors at a meeting in September, and reference to this agreement would be made when the bid was submitted.
TO REPORT
THE COUNCIL'S 10TH ANNIVERSARY
22 The Director summarised the plans for the 10th anniversary. Names for the Anniversary Lecture were suggested by the Chairman who then invited views and further suggestions. The proposal to commission prefaces to the Council's Reports on the 10th anniversary CD rom was welcomed. The Assistant Director, Tor Lezemore also gave an update about arrangements for the 10th anniversary reception.
ANY OTHER BUSINESS
23 As there was no further business to discuss the Chairman drew the meeting to a close.
Last Updated Mon, 7 June 2004