Minutes of the Council meeting held on 25 March 2004
Wed, 21 April 2004
Council (04) 2nd Meeting
NUFFIELD COUNCIL ON BIOETHICS
Minutes of the Meeting held at 28 Bedford Square, London WC1B 3JS
on 25 March 2004 at 10.30 am
PRESENT:
Professor Catherine Peckham (Deputy Chair)
Professor Tom Baldwin
Professor Sir Kenneth Calman
Professor Peter Harper
Professor Peter Lipton
Baroness Perry of Southwark
Professor Martin Raff
Mr Nick Ross
Professor Peter Smith
Professor Albert Weale
Dr Alan Williamson
APOLOGIES: Professor Sir Bob Hepple QC, FBA (Chairman), The Rt Reverend Richard Harries, Professor Dame Marilyn Strathern, Professor Herbert Sewell, Dr Sandy Thomas (Director)
SECRETARIAT: Dr Catherine Moody, Harald Schmidt, Nicola Perrin, Caroline Rogers, Julia Fox, Elaine Talaat-Abdalla and Mun-Keat Looi
The Chairman welcomed Professor Peter Harper and Mr Mun-Keat Looi to their first meeting of the Council.
MINUTES OF (04) 1st MEETING
1. It was agreed that the Minutes were an accurate record of the previous meeting.
MATTERS ARISING
2. There were no matters arising other than items which would be addressed as part of the main agenda.
CHAIRMAN’S ITEMS
LEGISLATION ON THE USE OF HUMAN TISSUE
3. The Public Liaison Officer briefed members on the recent developments in the progress of the proposed new legislation on human tissue (the Human Tissue Bill). It was agreed that the Council’s paper which had been submitted to the House of Commons Standing Committee on the Human Tissue Bill would be circulated to appropriate members of the House of Lords when it reaches the second reading stage. The Deputy Chair wished to record the Council’s congratulations to the Secretariat on the rapid drafting of the paper.
MAIN BUSINESS
WORKING PARTY ON THE ETHICS OF RESEARCH INVOLVING ANIMALS
Council (04) 15
4. Lady Perry introduced the Working Party’s first draft of the Report. The Working Party had now met seven times. A number of fact finding meetings, including experts in regulation and the development of alternatives to animal research had been held. The Working Party had also visited academic and commercial laboratories undertaking different kinds of research. The consultation with the public had been very successful, and the responses received reflected the complexity of the issues raised by the topic. The Chair then commented on the structure of the current draft Report.
5. The Deputy Chair thanked Lady Perry for presenting the Report. She observed that the draft was attempting to put forward a very balanced view and the inclusion of quotations from the consultation with the public was helpful. The Deputy Chair then invited members to comment on the Report. A wide-ranging discussion of each of the chapters then took place.
Peer Review
6. In view of the further work which needed to be done, it was agreed that the draft Report should be discussed again at the meeting of the Council in June, before it went out for peer review. The timetable for the Report would therefore need to be reviewed. Professor Sir Kenneth Calman emphasised that it was crucial to ensure that the arguments made in the Report were robust even though it would take more time than initially anticipated. This had proved to be the case with the HRRDC Report.
Members of the Council were asked to select 12 peer reviewers from the list prepared by the Working Party. A number were selected, and additional suggestions were made for consideration at the next meeting. It was particularly important that a veterinary scientist be included.
SEMINAR ON THE WAY WE REASON:
DELIBERATION, CONSULTATION AND POLICY IN BIOETHICS
Council (04) 16
7. Members noted the progress which had been made in the planning of the Seminar. The point was made that the role of the media would not be addressed within the current programme. Final papers for the Seminar would be circulated in late April.
WORKING PARTY ON THE ETHICS OF PROLONGING LIFE IN FETUSES AND NEONATES
Council (04) 17
8. The Council agreed that the title of the new Working Party should be changed and after some discussion it was agreed that this should be ‘Working Party on the ethics of prolonging life in fetuses and the newborn’.
9. It was agreed to that the Chairman should approach a possible Chair for the Working Party. When the Chair had been appointed, he or she would be consulted on the proposed membership of the Working Party.
10. A discussion was held on the revised terms of reference. The third point did not adequately reflect the possibility of general morbidity and mortality as opposed to disability. It was agreed that 3b should be changed to: “the relationship between changing survival rates and longer term outcomes”. There was also discussion about the fourth point which implied a focus on data protection rather than availability of data. It was agreed that 4e should be changed to: “Availability of routine data in the context of long-term follow-up”.
WORKSHOP ON THE ETHICS OF PUBLIC HEALTH
Council (04) 18
11. The draft programme for the Workshop was discussed and it was felt that the phrase on the programme Individual Choice and Community Benefit might be a more suitable title. Other members agreed, noting that the original idea for the Workshop was based on a discussion with this title at the Forward Look meeting in 2003. One possibility was that the title could be introduced into the Workshop programme as a sub-title. A list of participants was discussed and a number of recommendations made.
HRRDC II SOUTH AFRICA
Council (04) 19
12. The mix of delegates had allowed very valuable discussion and the Workshop was felt to have been worthwhile. It was proposed that a short follow-up paper should be produced, based on the background paper and discussions at the Workshop. The paper would be sent for peer review during the summer, with a view to being approved by the Council at its October meeting. The Council’s response to the consultation of the World Medical Association on the topic was noted.
DIRECTOR’S REPORT
POST LAUNCH ACTIVITY ON REPORTS 2003
Council (04) 20
13. Members welcomed the paper as it highlighted what happened ‘behind the scenes’ to the Council’s work. The Assistant Director, Harald Schmidt, reported that there had been additional positive responses from the European Commission on the Discussion Paper The use of genetically modified crops in developing countries.
BI-LATERAL MEETING WITH DER NATIONALE ETHIKRAT, GERMANY
14. The joint meeting would commence with an evening dinner on 12 July, with a full meeting the following day. The Council agreed with the proposal that the ethics of public health was a suitable topic for the meeting as it would be interesting to have the German perspective. There was some discussion as to whether the title should be changed, in light of the proposed revision to the title of the Workshop.
GENETIC SCREENING
Council (04) 21
15. Discussion on this topic was adjourned at the last meeting until after the paper on Human Tissue had been completed. The Chairman had indicated that he was concerned about the work-load on the Secretariat and had suggested this could be externally commissioned, or undertaken with the assistance of an intern, (as had been the case with the HRRDC background paper). Professor Harper observed that it would be difficult to produce a ‘small paper’ as much has taken place over the ten years. The term ‘screening’ was ambiguous ten years ago and still was. It could be used in a context of general public health ‘screening’, or in a more specific sense, including ‘testing’ and family based investigations. The Human Genetics Commission had done significant work in the area and it was important to ensure that this work was not duplicated. It was suggested that the topic should be discussed as an item at the joint meeting. It was agreed that the work should proceed in two stages. The first stage should involve a meeting of the Steering Committee, and the production of a brief report to allow consideration of whether further work might be appropriate. Professor Peter Harper agreed to be a member of the Committee and suggested two names for possible members. The terms of reference (point 2) were amended to ‘identify’ developments in the area of genetic screening, rather than ‘review’ them.
TO REPORT
BIOETHICS BRIEFING:
ACTIVITIES OF OTHER ORGANISATIONS
Council (04) 22
16. The Briefing was received and noted.
FINANCIAL REPORT: MANAGEMENT ACCOUNTS TO 31 DECEMBER 2003
Council (04) 23
17. The Management Accounts for the period up to the 31 December 2003 were received and noted.
COUNCIL’S REVISED DRAFT WORK PLAN FOR 2004
Council (04) 24
18.The Council’s revised Draft Work Plan was received and would be amended in the light of discussion at this meeting.
ANY OTHER BUSINESS
19. The Deputy Chair wished to record the Council’s thanks to Professor Albert Weale for his outstanding contribution to the work of the Council. This was Professor Weale’s last formal meeting, although he would take part in the Council’s Seminar on 13 May and attend a formal farewell lunch on Thursday the 14 October.
QUARTERLY BULLETIN
Information (04) 03
20. For information.
WEB REPORT
Information (04) 04
21. The web report figures were noted.
REMAINING MEETING DATES FOR 2004
COUNCIL
Wednesday 23 June 10.30 am
Thursday 14 October 10.30 am
FORWARD LOOK SEMINAR: The Way we reason:
deliberation, consultation and policy in bioethics.
Thursday 13 May full day meeting
All meetings will be held at 28 Bedford Square.
Last Updated Thu, 17 June 2004