Minutes of the Council meeting held on 20 January 2005
Mon, 28 February 2005
Council (05) 1st Meeting
NUFFIELD COUNCIL ON BIOETHICS
Minutes of the Meeting held at 28 Bedford Square, London WC1B 3JS
on 20 January 2005, at 10.30 am
PRESENT:
Professor Sir Bob Hepple QC FBA (Chairman)
Professor Catherine Peckham (Deputy Chair)
Professor Margot Brazier
Professor Roger Brownsword
Professor Sir Kenneth Calman
Professor Peter Harper
The Rt Reverend Richard Harries
Professor Peter Lipton
Professor Martin Raff
Mr Nick Ross
Professor Peter Smith
Baroness Perry of Southwark
Dr Alan Williamson
APOLOGIES:
Professor Tom Baldwin, Lord Plant of Highfield, Professor Dame Marilyn Strathern and Professor Herbert Sewell
SECRETARIAT:
Dr Sandy Thomas, Dr Catherine Moody, Harald Schmidt, Julia Fox, Cath Joynson, Caroline Rogers, Elaine Talaat-Abdalla and Mun-Keat Looi
The Chairman welcomed Professor Roger Brownsword to his first formal meeting of the Council and also Cath Joynson who had joined the Secretariat as Communications and External Affairs Manager.
MINUTES OF (04) 4th MEETING
1 It was agreed that the Minutes were an accurate record of the meeting held on 14 October, 2004.
MATTERS ARISING
2 There were no matters arising.
CHAIRMAN’S ITEMS
MEMBERSHIP
3 The Council noted that the Subgroup on membership would meet later in the day to consider a draft proposal for a more open and accountable process for appointing new members. A full proposal would be prepared for members to consider at their meeting in March.
GOVERNMENT REVIEW OF BIOETHICS ADVICE
4 The Chairman reported that the House of Commons Select Committee on Science & Technology was reviewing the HFE Act. The final report of the Committee would be circulated for the Council to consider when it was published later in the year.
FORWARD LOOK MEETING 2005
Council (05) 01
5 Members were pleased to learn that Professor Norman Daniels had accepted the Chairman’s invitation to present the keynote address at the Forward Look meeting in 2005. An outline of the address would be requested, to ensure that the speech was tailored to the Council’s interests and also help decide the best discussants to respond to the lecture. The Chairman requested additional suggestions for discussants from continental Europe, to be sent to Julia Fox. It was agreed that guests from the German and French bioethics committees should included, either as discussants or invitees. The first round of invitations to Professor Daniels’ lecture had been despatched, but there would be the opportunity to invite others in the second round, should members have further suggestions.
MAIN BUSINESS
WORKING PARTY ON THE ETHICS OF RESEARCH INVOLVING ANIMALS
Council (05) 02
Work progress
6 The Chair of the Working Party updated the Council on recent progress. Confidentiality issues were also discussed.
Final draft Report
7 The Chair of the Council thanked the Chair and members of the Working Party, and the Secretariat, for producing the final draft of the Report. This was commended for its scope and detail of information, balance in conclusions, and for setting out clearly the relevant ethical arguments.
Procedure for signing off
8 The Chairman proposed that a subgroup should be given responsibility for agreeing the final version of the Report.
Other issues
9 It was requested that at the next Council meeting there should be a general review of any lessons to be learned about the constitution and working methods of the working groups.
HRRDCII SOUTH AFRICA
Council (05) 03
10 The Director thanked members for their helpful comments, which had now been incorporated. The draft Discussion Paper was being edited to make it ready for printing during February and publication in March. It would still be possible to launch the Paper to coincide with the launch by the Wellcome Trust launch of their related guidelines.
WORKING PARTY ON THE ETHICS OF PROLONGING LIFE IN FETUSES AND THE NEWBORN
Council (05) 04
11 Members were updated on the meeting of the Working Party held in November, 2004. The purpose of the meeting had been to identify the principal social and ethical issues for subsequent discussion, to advise upon the questions to be used in the Council’s consultation and to discuss fact finding meetings. Members noted that the consultation document would be finalised at the forthcoming meeting of the Working Party on 3 February, then circulated for the Council’s approval. The Chairman commented that the Working Party was making good progress.
WORKING PARTY ON THE ETHICS OF PUBLIC HEALTH
Council (05) 05
12 A Council Subgroup had met to draw up terms of reference and to make initial suggestions for membership of the new Working Party on the Ethics of Public Health. Two changes were made to the draft terms of reference, as follows:
A new term should be inserted at 2 c), which read ‘Those who are poor or socially excluded;’ The existing 2 c) would therefore become 2 d).
The third term of reference should be shortened to read:
’3a The separate obligations of individuals to the community with regard to public health;’.
13 While the terms of reference were rather broad, the Council did not wish to restrict the freedom of the new Chair and members to focus them further. Members commented that the areas listed in the footnote were merely examples and that it was not necessary for the Working Party to address them all.
14 Suggestions for the Chair were considered. The Chairman asked members to send any further suggestions to the Deputy Director, so that a longer list and biographies could be presented at the next meeting.
DIRECTOR’S REPORT
FIVE YEAR FUNDING BID
15 The Director reported that a small ad hoc group of Council members had been very helpful in advising the Secretariat on a preliminary outline proposal for the next funding period. This would be revised in time for the March meeting of the Council and a full proposal prepared from April onwards for discussion in depth at the June meeting. The proposals would be submitted to the funders at the beginning of September and the funding decision would be known by the end of January, 2006.
2ND BILATERAL MEETING WITH NATIONALER ETHIKRAT, GERMANY
16 The second bilateral meeting with the Nationaler Ethikrat would be held in Berlin in the Autumn. The date and topic for the meeting had yet to be decided.
2ND BILATERIAL MEETING WITH COMITÉ CONSULTATIF NATIONAL D'ETHIQUE, FRANCE
Council (05) 06
17 The second bilateral meeting with the CCNE would take place on the 4th February 2005, with a buffet supper on the preceding evening. The main item for discussion would be the ethics of Genetic Screening and members were asked to provide advice after the meeting on possible case studies. The Council agreed that the topic of vCJD transmission in blood should be added to the agenda. This had been requested by the CCNE and it would be relevant to the ethics of public health. The CCNE members attending were part of a Working Group that was considering vCJD transmission.
GENETIC SCREENING
Council (05) 07
18 The draft paper on the ethics of Genetic Screening, which had been prepared to follow up the original 1993 Report was introduced. Although this had been published in 1993, it was still downloaded frequently (20,000 downloads during 2004), which suggested that people would find it useful if the paper were to be published and made available on the Web site.
19 The draft paper broadly followed the sequence of discussions in the original Report, which had documented for the first time the ethical issues likely to arise. Questions over genetic screening in the context of employment and insurance remained, though the latter was currently more contentious. A moratorium until 2006 had been imposed on the use of genetic information for insurance purposes.
20 The Council noted that a number of important issues remained. These had been identified as conclusions to the draft paper. A primary conclusion of the Steering Group was that there was no need for a new Working Party at this stage, because the other bodies working in the area were already producing reports and guidelines. The Human Genetics Commission, for example, would issue a report on reproductive decision-making later in 2005.
21 Members welcomed the draft paper and agreed that it should be published. While there was clearly no need for a Working Party at this stage, the situation needed to be kept under review because the area was evolving and there might well be a future need, perhaps in five years’ time.
22 The Council agreed that the text of the draft Report should be redrafted in the light of any further comments from members, then sent for peer review as soon as possible. The names of four peer reviewers were agreed. After subsequent revisions and review by the Steering Committee, the Council would finalise the text at the June meeting. This would be followed by the launch of the follow up Report.
TO REPORT
BIOETHICS BRIEFING:
ACTIVITIES OF OTHER ORGANISATIONS
Council (05) 08
23 The Briefing was received and noted.
DELCARATION ON UNIVERSAL NORMS ON BIOETHICS BY THE INTERNATIONAL BIOETHICS COMMITTEE OF UNESCO
Council (05) 09
24 The Chairman thanked the members who had helped to provide the Council’s response to early drafts of the Declaration. The Assistant Director commented that two substantive points made by the Council had been incorporated into the latest draft. It might be necessary for the Secretariat to consult members further on subsequent drafts.
FINANCIAL REPORT: MANAGEMENT ACCOUNTS TO 31 AUGUST 2004
Council (05) 10
25 The Management Accounts for the period up to 30 November 2004 were received and noted.
COUNCIL’S REVISED DRAFT WORK PLAN FOR 2005
Council (05) 11
26 The Council’s revised Draft Work Plan was received and noted.
ANY OTHER BUSINESS
27 There was no other business.
QUARTERLY BULLETIN
Information (05) 01
28 For information.
WEB REPORT
Information (05) 02
29 The web report figures were noted.
MEETING DATES FOR 2005
Meetings of the Council in 2005:
(all commencing at 10.30 am)
Thursday 17 March
Wednesday 22 June
Wednesday 19 October
Forward Look Seminar:
evening event Wednesday 11 May and
full-day meeting Thursday 12 May
All meetings will be held at 28 Bedford Square.
Last Updated Mon, 28 February 2005