Minutes of the Council meeting held on 21 June 2006
Mon, 4 September 2006
Council (06) 3rd Meeting
NUFFIELD COUNCIL ON BIOETHICS
Minutes of the Meeting held at 28 Bedford Square
London WC1B 3JS on 21 June 2006 at 10.30am
PRESENT
Professor Sir Bob Hepple QC FBA (Chairman)
Professor Margot Brazier
Professor Roger Brownsword
The Rt Reverend Richard Harries
Professor Peter Harper
Professor Søren Holm
Mr Anatole Kaletsky
Dr Rhona Knight
Professor Peter Lipton
Professor Hugh Perry
Professor Dame Marilyn Strathern
APOLOGIES
Professor Sir Kenneth Calman
Professor Sir John Krebs
Professor Lord Raymond Plant
Professor Peter Smith
Dr Alan Williamson
SECRETARIAT
Professor Sandy Thomas, Dr Catherine Moody, Carol Perkins, Catherine Joynson, Caroline Rogers and Audrey Kelly-Gardner.
The Chairman welcomed Professor Søren Holm to his first meeting. On behalf of the Council, the Chairman expressed the gratitude of the Council to Professor Dame Marilyn Strathern for whom this was the last meeting. Professor Catherine Peckham would be joining Council for her farewell lunch.
MINUTES OF (06) 2nd MEETING
1 It was agreed that the Minutes were an accurate record of the meeting held on 23 March.
MATTERS ARISING
2 There were two matters arsing that were not dealt with as items on the agenda.
- Forward Look 2007 (minute 19-20, page 6): The Chairman reported that there were currently two proposals under consideration. At the last meeting of the Council it had been agreed that a one day horizon scanning workshop should be held either later in 2006 or as part of the Forward Look meeting in 2007. It was agreed that discussion of the $1k genome topic should be deferred to the Forward Look meeting in 2007, and thought given to the different ways in which the project could be approached.
- External Relations Strategy (minute 21-23): This was now being implemented by the Secretariat.
CHAIRMAN’S ITEMS
MEMBERSHIP
3 The Chairman reported that the Membership Panel would be meeting on 11 July with Baroness Elizabeth Butler-Sloss in the chair. There had been a good response to the advertisement for new members and the Panel would be making recommendations to the Council at the October meeting. Professor Hugh Perry had agreed to be co-opted onto the Panel.
MAIN BUSINESS
WORKING PARTY ON CRITICAL CARE DECISIONS IN FETAL AND NEONATAL MEDICINE: ETHICAL ISSUES
Council (06) 26
4 The Chairman congratulated Professor Margot Brazier and the Working Party on the substantial draft Report. It gave careful consideration to important issues. Professor Hepple advised members that the Council needed to approve the contents. Professor Brazier said that the restructuring of the contents had, as intended, made the Report much more direct and accessible to a general readership. It could now usefully be read by parents contemplating decisions or reflecting upon them as well as by policy makers, and the academic community. The peer review comments were in the process of being incorporated.
5 Members agreed that the Report read very clearly and would be accessible to a broad readership. The different sections were well balanced and members made a number of points on the draft Report.
6 The Council agreed the membership of a small Subgroup for signing off the Report at the end of August. Members will be Professor Bob Hepple (Chairman of the Council), Professor Margot Brazier, Professor Peter Lipton, Professor Soren Holm and Dr Rhona Knight. Professor Brazier thanked members for their constructive comments. There was a suggestion that this Report could be used to pioneer a publication using paper of a lighter weight and a magazine style with double column format. The Secretariat agreed to consider possible options .
PROPOSAL FROM THE MEDICAL RESEARCH COUNCIL: ETHICAL REVIEW IN CHINA
7 At the Council meeting in March it had been agreed that the Secretariat would explore holding a workshop with the Medical Research Council on ethical review in China. The workshop was to be arranged by the MRC with continuing advice from the Director or a member of Council as a member of the steering group.
WORKING PARTY ON PUBLIC HEALTH: ETHICAL ISSUES
Council (06) 28
8 The Director reported that the Professor Anne Johnson, Professor of Infectious Disease Epidemiology and Head of the Department of Primary Care and Population Sciences, University College London, had accepted an invitation to join the Working Party.
9 The Working Party was making good progress and had met for the third time on 26 May 2006. Recent discussion had been focused on new drafting for the chapter on the ethical framework for the Report, and the case study on the supplementation of food and water. There had also been a fact finding meeting with a number of experts on obesity.
10 The consultation had been launched on 19 May, preceded by a briefing for journalists. A summary of media activity was at Annex A. A number of Working Party members had volunteered to review materials for the associated workshops on the ethics of public health that were being developed by Ecsite-UK. The outcomes of these workshops would be made available to the Working Party during the consultation period.
WORKSHOP: NEUROSCIENCES
Council (06) 29
11 The Director reported that the Workshop to explore the ethical issues raised by advances in the neurosciences had been held on 11 May 2006, attended by a number of members of the Council. She drew attention to the final programme at Annex A and the draft note of the meeting at Annex B. It had become clear at the Workshop that there was a very broad spectrum of issues raised by advances in neurosciences. Members were invited to consider the points outlined in the paper, the scenarios at Annex C and to propose alternative ideas. A decision was required as to whether or not a Working Party should be established.
12 Members discussed the scenarios. Cognitive enhancement was suggested as a possible topic as it was already an issue that was developing rapidly. However, there was concern that cognitive enhancement did a large enough subject area and had already been discussed extensively. It was suggested that forensic (and other) non-diagnostic uses of neuroimaging technology did not raise unique issues.
13 Two further topics were proposed. The first was disease and the ageing brain. The issues raised by the ageing of the population and degenerative disease were very real and topical. It was important to identify the ethical issues that would be raised by this situation. The issues included cost, whose responsibility it was to care for the elderly, and unrealistic predictions for treatment. A debate on neurodegenerative disease might provide an opportunity to explore the idea of cross cutting themes by examining issues relating to ageing more generally. The second topic was mental illness in the third world. Members decided that further discussion of these topics was required and that this should take place at a separate meeting and by email.
14 It was agreed that an ad hoc subgroup of the Council should be set up to develop draft terms of reference and suggestions for membership of a Working Party. Members would include Professor Hugh Perry, Anatole Kaletsky and Professor Peter Lipton. Any further ideas for the Working Group should be forwarded to the Secretariat.
WORKING GROUP ON ETHICAL ISSUES RAISED BY THE FORENSIC USE OF BIOINFORMATION
Council (06) 30
15 The Chairman reported on the progress of setting up the Working Group. So far, Dr Robin Williams, Professor Graeme Laurie, Dr Bronwyn Parry and Professor Søren Holm had all agreed to join.
16 It was agreed that it would be interesting to explore the different attitudes to the use of bioinformation outside the UK, both in Europe and the USA. In discussion it was suggested that the terms of reference should include, not just DNA but also the use of neuroimaging technology and iris recognition. It was noted that as chair of the Working Group, the Chairman would hand over chairing the Council meeting when the paper was discussed to the Deputy Chair, Professor Peter Smith.
DIRECTOR’S REPORT
FIVE YEAR FUNDING BID
Council (06) 31
17 The Director reported that the Chairman and she had attended a meeting of the Wellcome Trust’s Academic Advisory Committee on 29 March 2006 and a meeting of the Nuffield Foundation Trustees on 12 May to put forward the Council’s case for additional funding. The funders remained unwilling to support an expansion but both organisations had said that there was the possibility of asking for funding for specific follow up projects.
18 The Nuffield Foundation Trustees had said they felt the Council’s role was to consider cutting edge issues and that topics should not actively be followed up after a year. This raised strategic questions about how the Council operated and meant choices about updating projects versus starting new ones. The main item of business at the October meeting would therefore be a discussion of strategy for the five year work programme.
19 In addition, the Trustees of the Nuffield Foundation had asked to meet more often with the Council. It was agreed that this would be a good idea and the suggestion was made that the current meetings with the Funders could be expanded to accommodate this plan. The Secretariat would explore the idea further.
$1K GENOMES AND THE NEED FOR A STUDY
Council (06) 32
20 This item was discussed under ‘Forward Look 2007’, matters arising.
ETHICAL PRINCIPLES IN THE COUNCIL’S WORK
21 The Secretariat had written to a number of individuals asking for the names of suitable candidates for carrying out the work. It was noted that the report of the project would need to be ready for the March Council meeting, so that it could be finalised in time for the May Forward Look meeting.
GENETIC SCREENING
22 The Director reported that the supplement to the 1993 Genetic Screening Report had been completed and was now with the designers. It updated some aspects of the original Report which was now out of print. Members would be notified when the document was placed on the website.
REACHING OUT TO YOUNG PEOPLE
Council (06) 33
23 The Communications and External Affairs Manager reported that the third meeting of the Reaching Out to Young People Advisory Group had taken place on 23 March with new members, Dr Rhona Knight and Ms Jenny Wales, Director of Education for Citizenship, Nuffield Foundation. Closer links were being developed with the Nuffield Curriculum Centre who had identified four types of educational activity with which they could assist. The Council was grateful to note that the Curriculum Centre was contributing resources towards the project.
BI-LATERAL MEETINGS 2006: NE
Council (06) 34
24 The Director reported that the meeting with the Nationaler Ethikrat (NER) had been held in Berlin on 25th April and a draft note of the meeting was at Annex A. The Secretariat was currently in discussion with the CCNE and NE about the possibility of holding a trilateral meeting next year.
TO REPORT
ETHICS OF RESEARCH INVOLVING ANIMALS
Council (06) 35
25 Members of the Council noted the paper.
FINANCIAL REPORT FOR YEAR TO 31 AUGUST(SUBJECT TO AUDIT)
Council (06) 36
26 The Management Accounts for the period up to 31 August 2005 were received and noted.
COUNCIL’S REVISED DRAFT WORK PLAN FOR 2006
Council (06) 37
27 The Council’s revised Draft Work Plan was received and noted.
QUARTERLY BULLETIN
Information (06) 05
28 This paper was noted.
WEB REPORT
Information (06) 06
29 The web report figures were noted.
Last Updated Mon, 4 September 2006