Minutes of the Council meeting held on 16 October 2003
Mon, 15 March 2004
Council (03) 4th Meeting
NUFFIELD COUNCIL ON BIOETHICS
Minutes of the Meeting held at 28 Bedford Square, London WC1B 3JS
on 16 October 2003 at 10.30 am
PRESENT
Professor Bob Hepple QC (Chairman)
Professor Catherine Peckham (Deputy Chair)
Professor Tom Baldwin
Professor Sir Kenneth Calman
The Rt Reverend Richard Harries
Baroness Perry of Southwark
Professor Dame Marilyn Strathern
Mr Nick Ross
Professor Herbert Sewell
Professor Peter Smith
Professor Albert Weale
Dr Alan Williamson
APOLOGIES
Professor Andrew Grubb and Professor Martin Raff
SECRETARIAT
Dr Sandy Thomas, Harald Schmidt, Nicola Perrin, Caroline Rogers, Julia Fox and Elaine Talaat-Abdalla
The Chairman welcomed Caroline Rogers, Research Officer, to her first meeting of the Council.
MINUTES OF (03) 3rd 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 those items which would be dealt with as part of the main agenda.
CHAIRMAN’S ITEMS
MEMBERSHIP
Council (03) 37
3 The Sub-group on Membership would meet to discuss possible candidates for a member with expertise in clinical genetics. Members were invited to submit their nominations to the Secretariat, or directly to the Chairman.
4 The Chairman invited members to consider the three names with expertise in philosophy which had been put forward by the Sub-group on membership. The Sub-group had proposed that Professor Peter Lipton be invited to become a full member of the Council following his Chairmanship of the Working Party on Pharmacogenetics: ethical issues. This proposal was strongly supported and agreed.
THE POST OF DEPUTY DIRECTOR
5 The Director reported to members that the question of replacing Tor Lezemore (Assistant Director) had been given careful consideration since the Council’s last meeting (Council 03, 3rd meeting). It had been decided that an appointment at the more senior level of Deputy Director would be appropriate. It had also been agreed that individuals seeking secondment from another organisation would be eligible to apply. Members had already received a copy of the advertisement. The post would also be placed on www.jobs.ac.uk website. The closing date for applications was 24 October and interviews would be held on 25 November. It was unlikely that the post would be filled before the early spring.
MAIN BUSINESS
SEMINAR ON RATIONALITY IN PUBLIC DEBATE ON BIOETHICS
Council (03) 38
6 The Chairman opened the discussion by observing that different aspects of this important topic were being considered by the Kings Fund (Health in the News, Risk, reporting & media influence), and the Royal Society (how scientists publish results), and the Strategy Unit of the Cabinet Office (Risk: Improving government’s capability to handle risk and uncertainty). It had been proposed that the Council might hold a seminar which addressed some aspects of rationality in public debate. The Chairman invited members to respond to the proposal.
7 It was suggested that the seminar could reflect on the role of the policy maker. The Government’s style of policy-making was also relevant. Consultations, citizens’ juries, and focus groups were now widely used. There was also considerable ‘deliberative space’ outside of government which was occupied by think tanks and similar bodies.
8 The topic was also linked to issues relating to public health. Public perception in this particular area was crucial. An important question was how such information was interpreted by those who received it. A focus on communication between government and the scientific community in the climate of increased transparency might be more fruitful.
9 A very important aspect of the topic concerned the teaching of science in schools. Care was needed in how risk associated with new technologies was portrayed in relevant curricula. The seminar would link into the work of the Council on Reaching out to Young People. Participants with expertise in sociology and education should be sought. It was also suggested that the seminar should aim to examine the broad concept of how people reason when considering issues in bioethics. An appropriate title for the seminar might be The way we reason: rationality in public debate on bioethics. It was agreed that Professor Albert Weale would work with the Chairman and Secretariat to devise a draft programme for the meeting. The programme would then be circulated to members for comment.
FUTURE WORK ON THE ETHICAL ISSUES RAISED BY PROLONGING LIFE
Council (03) 39
10 The Chairman invited members to consider whether there was a need for the topic to be considered at a further Workshop. Alternatively, the Council might proceed to taking the topic forward directly to a new Working Party. Members needed to consider the topic of Prolonging Life alongside the issue of Public Health (Council (03) 40), and decide which should be given priority for the next Working Party.
11 It was important that the Council examine the topic from a perspective where it could make a major contribution to the debate. It was agreed that an additional Workshop was not required. It was further agreed that there should be a Working Party, whose terms of reference should include ethical and legal issues relating to prolonging life in neonates and the treatment of foetuses, the nature of information provided to parents, the implications of counselling in the ante- and post-natal period, and the involvement of parents in decision-making.
12 The Secretariat would prepare draft terms of reference and a list of proposed members for the Working Party for the next meeting of the Council.
FUTURE WORK ON THE ETHICS OF PUBLIC HEALTH
Council (03) 40
13 Important issues relating to this topic had been raised at the Council’s Forward Look meeting in May. It was agreed that the issues certainly warranted consideration at a Workshop, with the possibility that a Working Party might be established at a later date. There were a number of approaches which might be explored at the Workshop. The use of two or three case studies to examine questions relating to the interests of the individual versus those of society would be helpful. The uptake of MMR vaccine in the UK was suggested as one possible case study.
14 Issues relating to the use of human tissue and health-related information should be included in the discussion. Consideration needed to be given to concerns that the levels of confidentiality applied to tissue samples and health-related information from individuals might not be serving the broader interests of public health. Recent precedents concerning confidentiality established by the Biobank project would need to be considered. More traditional areas of public health which involved the setting of standards as for example in the case of protection from harmful chemicals, should not be excluded.
15 The draft programme would be finalised at the January meeting. The Workshop would be timed to take place before Easter.
WORKING GROUP ON THE USE OF GENETICALLY MODIFIED CROPS IN DEVELOPING COUNTRIES
Council (03) 41
16 The final draft version of the Discussion Paper had been circulated to members of the Council in advance of the meeting. In introducing the Paper for discussion, the Chairman observed that this was the first occasion that a Working Group had been established to follow up a Report. The Group and especially the Secretary, Harald Schmidt, had undertaken a great deal of work to produce the draft. There was a need for members of the Council to discuss some of the important points and recommendations made in the Paper.
17 After some discussion amongst members, the Chairman was authorised to sign off the Report.
18 It was agreed that while it had been appropriate to publish a draft version of the Paper for comment, this was not a good model for other Reports and Papers of the Council. An exception had been made for this particular topic to enable the Paper to be available to the public during the national debate on the use of GM crops in the UK.
WORKING PARTY ON THE ETHICS OF RESEARCH INVOLVING ANIMALS
Council (03) 42
19 Lady Perry reported to members that the consultation process had been launched on 3rd October. Over 1000 copies of the consultation document had already been downloaded from the website. It had also been circulated widely by the Secretariat who were congratulated on the high quality of document.
REACHING OUT TO YOUNG PEOPLE ADVISORY GROUP
Council (03) 43
20 This recently established Group had made a number of recommendations in its paper for consideration by the Council. The production of short guides to all Reports had been recommended. Short guides had two objectives. They provided a summary of the Report and were useful as a tool to reach a wider audience. The successful publication of a short guide for the recent Report on the ethics of Pharmacogenetics was therefore an important step forward.
21 One of the Council’s Reports, The ethics of research related to healthcare in developing countries was being used in higher education as a teacher’s manual. Other Reports could possibly be used in this way, and modified versions prepared for wider use in schools. However, there were resource implications for the Secretariat in producing modified versions of Reports and these should be borne in mind. It was also important to define the term ‘young people’ and not to exclude those groups who were not studying science.
22 It was agreed that short guides to Reports should be produced where appropriate. Further consideration needed to be given to the other issues raised in the discussion. The Chairman suggested that dissemination and education could form a theme for a future Forward Look Seminar. It was agreed that the current Group should be invited to continue its work, possibly adding one or two more members.
23 It was noted that the consultation with Science Centres, planned for the Working Party on the ethics of research involving animals, was a precedent for the Council and opportune.
WORKING PARTY ON PHARMACOGENETICS
Council (03) 44
24 This Report had been successfully launched. There had been modest press coverage. 1500 downloads of the Report had been made from the website. The Chairman of the Working Party, Professor Peter Lipton, had made an excellent presentation at the Wellcome/Cold Spring Harbor Conference, at the Sanger Centre, Cambridge on 24 September 2003. Additional invitations to present the Report had been received.
HRRDC II SOUTH AFRICA
Council (03) 45
25 Planning for the Workshop in Cape Town was progressing well. The Steering Committee had worked very productively. The competition held for 25 funded places had elicited 120 applications from 47 countries. External funding of £96,000 had been raised to fund the Workshop. The programme has now been finalised. The meeting would be centred around case studies and a Discussion Paper would be published after the Workshop had taken place. The original Report on The ethics of research related to healthcare in developing countries had created a great deal of interest around the world. The Workshop presented a valuable opportunity to bring together an international group of health professionals working in the field to examine whether the recommendations made by the Report had been appropriate.
DIRECTOR’S REPORT
BI-LATERAL MEETING WITH CCNE
26 This meeting would be held in Paris, on 28 November 2003. The Council’s French colleagues were very enthusiastic about the chosen topic of ‘public health ethics’.
TO REPORT
GENETICS SCREENING
27 This agenda item has arisen from correspondence from the former Executive Secretary. He had suggested that the Council establish some form of follow up on the Council’s first Report on genetic screening, in the light of the Government’s White Paper. Ten years had now elapsed and it might be timely to examine the recommendations which had been made in the context of what had been achieved by public policy. The Chairman invited members to respond to this proposal.
28 It was noted that this had been a very important and influential Report. However, caution was expressed about over-extending the resources of the Secretariat. It was important to distinguish between follow up and a consideration of new and future developments in the field, such as the Biobank. The Report had established principles for genetic screening and follow-up should examine whether they still applied. A Paper would be produced for the next meeting of the Council to outline the plan for the project.
BIOETHICS BRIEFING:
ACTIVITIES OF OTHER ORGANISATIONS
Council (03) 46
29 The Briefing was received and noted.
FINANCIAL REPORT: MANAGEMENT ACCOUNTS TO 30 SEPTERMBER 2003
Council (03) 47
30 The Management Accounts for the period up to 30 September 2003 were received.
COUNCIL’S REVISED DRAFT WORK PLAN FOR 2003/2004
Council (03) 48
31 The Council’s Draft Work Plan was received and would be revised in the light of the discussion at the meeting.
ANY OTHER BUSINESS
32 There was no additional business.
FOR INFORMATION
MINUTES OF EC FORUM OF NATIONAL ETHICS COMMITTEE MEETING
Information (03) 08
33 This was noted. The Director would attend the next meeting in Rome in December, 2003.
QUARTERLY BULLETIN
Information (03) 09
34 For information.
WEB REPORT
Information (03) 10
35 The web report figures were noted.
MEETING DATES FOR 2004
COUNCIL
Wednesday 14 January 10.30 am
Thursday 25 March 10.30 am
Wednesday 23 June 10.30 am
Thursday 14 October 10.30 am
FORWARD LOOK SEMINAR
Thursday 13 May full day meeting
Last Updated Mon, 7 June 2004