Minutes of the Meeting held on 21 March 2002
Mon, 24 June 2002
Council (02) 3rd Meeting
NUFFIELD COUNCIL ON BIOETHICS
Minutes of the Meeting held at 28 Bedford Square London WC1B 3JS
on 26 June 2002 at 10.30 am
PRESENT
Professor Sir Ian Kennedy (Chairman)
Professor Martin Bobrow, Professor Tom Baldwin, Professor Bob Hepple, Professor John Ledingham, Professor Catherine Peckham, Mr Nick Ross, Professor Herbert Sewell, Professor Dame Marilyn Strathern, Professor Albert Weale, Dr Alan Williamson
APOLOGIES
Professor Sir Kenneth Calman, Mrs Rebecca Burke, The Rt Reverend Richard Harries and Professor Martin Raff
SECRETARIAT
Dr Sandy Thomas, Tor Lezemore, Harald Schmidt, Nicola Perrin, Natalie Bartle, Julia Fox and Elaine Talaat-Abdalla
The Chairman recorded the Council’s congratulations to Ms Rebecca Burke on the award of her CBE. Congratulations were also offered to Professor Sewell on his appointment as Pro Vice Chancellor of the University of Nottingham.
The Chairman welcomed Natalie Bartle who had recently joined the Secretariat as Research Officer.
MINUTES OF (02) 2nd MEETING
1 It was agreed that the Minutes were an accurate record of the previous meeting.
MATTERS ARISING
2 Joint meeting with the Human Genetics Commission:
The Deputy Chairman, Professor Martin Bobrow reported on the 2nd joint meeting with the Human Genetics Commission, which took place on 13 June 2002. Baroness Kennedy, Chair and Professor Sandy McCall-Smith, Vice-Chair, had attended on this occasion. The members of Council who were present included Professor Martin Bobrow, Professor Albert Weale and the Rt Reverend Richard Harries. Members, together with the Secretariat, had described the Council’s current work in three areas relating to genetics: the genetics of human behaviour, the ethics of patenting DNA, and the ethics of pharmacogenetics. Questions were then invited. After a discussion, Professor McCall Smith described the Commission’s recent report, Inside Information, and drew the Council’s attention to two new topics which had been selected for study: the provision of genetic tests direct to the public and issues relating to reproduction. The Chairman of the Council confirmed that there was a need for a continued rapport between the HGC and the Council.
CHAIRMAN’S ITEMS
APPOINTMENT OF THE NEW CHAIRMAN
3 Members of the Council were joined by Mr Anthony Tomei, Director of the Nuffield Foundation, who reported on the progress which had been made in the appointment of a new Chairman of the Council.
DIRECTOR’S REPORT
FORWARD LOOK SEMINAR 2002 Council (02) 21
4 The Paper setting out the discussion and conclusions arising from the Forward Look meeting was considered. With regard to Membership, it was agreed that a letter explaining the outcome of the initiative on expressions of interest would be sent to those who had put their names forward. Professor Albert Weale agreed to prepare a draft letter. It was also agreed that in future, the website would invite nominations for suitable candidates. It was further agreed that the opportunity for self-nomination would be discontinued: all nominations being made by a proposer. As regards the Review of methods of working, it was agreed that the Guidance for Chairs and members of Working Parties, which had been prepared by the Secretariat, would be re-circulated at a later date: a careful examination of the Council’s working practices was required. It was agreed that smaller groups charged with producing short Reports in a matter of months needed to have a Chair to ensure that the Discussion Papers produced by members and the Secretariat were appropriately drafted in good time. The draft Guidance would make explicit reference to the crucial responsibility of the Chair in this matter.
PROPOSED WORKSHOP/ROUND TABLE MEETING ON
END OF LIFE
5 The Chairman reminded the Council that a final decision on whether the topic on the End of life had not yet been made. A reply from the Lord Chancellor to the Chairman’s letter had stated that while there were not any specific issues that his Department would wish the Council to examine the Department would be interested in the findings of a study by the Council. A response from the Chief Medical Officer was still awaited. The Chairman noted that it was important to encourage an understanding and appreciation of the interaction between law and ethics and that the Council should remain in touch with the Lord Chancellor’s Department if a decision was made to take the topic forward.
6 It was agreed that a Workshop on the topic of the End of life should be held in the Autumn and that it should include a discussion of the issues associated with interventions at the start of life (including neonates and young children) and at the end of life, particularly as regards the elderly and where priorities lie in terms of effort and funding. The aim of the Workshop would be to identify the main issues raised by the topic and to decide whether the Council should convene a Working Party.
MAIN BUSINESS
WORKING PARTY ON THE ETHICS OF RESEARCH RELATED TO HEALTHCARE IN DEVELOPING COUNTRIES
Council (02) 22
7 Since the last meeting of the Council, the Report on the ethics of research related to healthcare in developing countries had been launched on 25 April. The Paper described the launch and coverage by the media and a selection of press cuttings was provided. It was agreed that the press conference and seminar had been successful. The seminar was particularly well attended and had provided an effective forum for discussion of the recommendations of the Report. The main interest in coverage of the Report by the press was, as expected, by publications specialising in healthcare rather than the broadsheet newspapers, radio and television. The Chairman thanked the Secretariat for organising the launch.
8 The Chairman then invited members to comment on the suggestion made by The Chairman of the Working Party on The ethics of research related to healthcare in developing countries, Professor Sir Kenneth Calman, at the Forward Look seminar, that a group might be set up in approximately two years time to evaluate the impact of the Report. It was agreed that a general strategy for ‘re-visiting’ and evaluating the impact of the Council’s Reports and Discussion Papers was needed, as part of the Council’s procedures for following up its work. An appropriate mechanism for undertaking this in a formal manner had yet to be agreed. The aim should be to evaluate the influence that a particular Report or Paper might have had and to establish whether or not the recommendations had been implemented, and if not, why this was so. The intention would not be to re-convene a Working Party, or other group, but to seek the views of those individuals who were representative of a range of organisations at which the recommendations were directed. If it was agreed that there was also a need to follow up the response of organisations, including those of government and others, for example commercial companies and research institutions, to recommendations shortly after a Report was published, by means of a letter from the Chairman of the Council. This process was already under way in the case of The ethics of research related to healthcare in developing countries.
9 Professor Sir Kenneth Calman had also suggested that the Report on might be used as the basis for a book, offering guidance to committees on research ethics in developing countries. The Chairman invited members to comment on the suggestion. There were mixed views. One view was that such a book might be very useful for courses which were aimed at providing training for members of research ethics committees. It was not clear, however, who might be able to undertake the task of writing the book. Others questioned whether a book would achieve more than the Report had already achieved. The Chairman pointed out that the preparation of a book would involve ‘translation’ of work that the Council had already published and therefore caution was needed. There was merit in drawing attention to the Report, but it might be more appropriate for the Council to act as a facilitator of such a project. It was agreed that Professor Sir Kenneth Calman should be invited to take the idea further by preparing a Paper for the October meeting of the Council.
WORKING PARTY ON GENETICS &
HUMAN BEHAVIOUR: THE ETHICAL CONTEXT
Council (02) 23
10 Professor Bob Hepple, Chairman of the Working Party, set out the main findings of the current draft of the Report. The draft was nearing completion and the final revision of the wording of the recommendations was in progress. A discussion then followed in which further amendments were put forward. These were duly noted for incorporation into the text. It was agreed that the Report read well and that the Working Party had worked together very effectively. The Report would be launched on the 2 October, 2002.
ROUND TABLE ON THE ETHICS OF PATENTING HUMAN DNA
Council (02) 24
11 The Director reported that the drafting of the Discussion Paper was close to completion. The Secretariat was currently working with members of the Round Table meeting and legal experts, particularly Mr Andrew Sheard, to resolve some final issues and to clarify a number of technical details. It was hoped that the timetable could be adhered to so that the Paper could be launched on the 10th July before the summer break. The Chairman emphasised the importance of the paper being signed off in its final form by all members of the Council. It was agreed to provide members with the final revised draft which they would be asked to read and sign off by Monday 1st July. In the light of those responses, the Chairman would decide whether the Paper was ready for printing.
WORKING PARTY ON THE ETHICS OF RESEARCH INVOLVING ANIMALS
Council (02) 25
12 The Chairman invited members to express their views about the names that had been put forward as prospective members of the Working Party. A broad membership was needed comprising individuals who were prepared to listen to and discuss the views of others. After a lengthy discussion, a shortlist of possible chairs and a final list of prospective members was agreed. The Director would make contact with the names put forward as possible chairs. Once acceptance was confirmed, invitations would be sent to the prospective other members.
ROUND TABLE MEETING ON ETHICS AND PHARMACOGENETICS
Council (02) 26
13 The Director reported that good progress had been made with the plans for this study. Comments then were invited on the draft terms of reference which had been prepared on the basis of advice received at the Workshop held in December 2001. The Chairman, Professor Peter Lipton, had already met with the Secretariat to discuss plans for the first meeting, which would take place on 4 September.
NUFFIELD COUNCIL ON BIOETHICS GLASGOW
MEETING
Council (02) 27
14 The Director and Public Liaison Officer reported on the progress which had been made with the planning of the meeting. Members were invited to submit names of those to be invited to the Secretariat.
NUFFIELD COUNCIL ON BIOETHICS:
INTERNATIONAL CO-OPERATIVE PROJECT
Council (02) 28
15 The suggestion that the Council should establish a standing Working Group which would consider ethical issues relevant to developing countries was an interesting idea that needed more discussion. It was agreed to defer the issue to the October meeting of the Council.
TO REPORT
BIOETHICS BRIEFING: ACTIVITIES OF OTHER ORGANISATIONS
Council (02) 29
16 The Briefing was received and noted. The Chairman drew members’ attention to the establishment of the new Irish Council for Bioethics (www.ria.ie) which the Director would be visiting in July, and the US President’s Council on Bioethics (www.bioethics.gov/). It was agreed that contact would be made with the President’s Council as part of the Council’s programme of international collaboration.
FINANCIAL REPORT Council (02) 30
17 The Council’s Financial Plan was received and noted.
COUNCIL’S WORK PLAN Council (02) 31
18 The Council’s Work Plan was received and noted.
ANY OTHER BUSINESS
19 Members were informed that the CD Rom was being prepared for launch in the Autumn and that 75,000 copies would be ordered.
FOR INFORMATION Information (02) 05
MEETING DATES FOR 2003
20 To be noted.
QUARTERLY BULLETIN Information (02) 06
21 For information.
WEB REPORT
22 The Public Liaison Officer reported that statistics relating to the use of the website were not available while the license for the site was being renegotiated. They would be provided in due course.
MEETING DATES FOR 2002
Final Council meeting:
Thursday 24 October
In Glasgow: Council meeting 2-4.30 pm
Open meeting 6-8.00 pm
MEETING DATES FOR 2003
Council meetings:
Wednesday 29 January
Thursday 27 March
Wednesday 25 June
Thursday 16 October
All at 10.30 am, followed by lunch
Forward Look Seminar
Thursday 15 May
Full-day meeting at the Royal Society of Arts
Last Updated Mon, 7 June 2004