Minutes of the Council meeting held on 23 March 2006
Wed, 17 May 2006
Council (06) 2nd Meeting
NUFFIELD COUNCIL ON BIOETHICS
Minutes of the Meeting held at 28 Bedford Square London WC1B 3JS on 23 March 2006 at 10.30am
PRESENT
Professor Sir Bob Hepple QC FBA (Chairman)
Professor Margot Brazier
Professor Sir Kenneth Calman
The Rt Reverend Richard Harries
Professor Peter Harper
Dr Rhona Knight
Professor Sir John Krebs
Professor Peter Lipton
Professor Hugh Perry
Professor Peter Smith
Professor Dame Marilyn Strathern
Dr Alan Williamson
APOLOGIES
Professor Roger Brownsword
Professor Soren Holm
Mr Anatole Kaletsky
Professor Lord Raymond Plant
SECRETARIAT
Professor Sandy Thomas, Dr Catherine Moody, Harald Schmidt, Carol Perkins, Catherine Joynson, Caroline Rogers and Julia Trusler.
The Chairman welcomed Professor John Krebs. Professor Catherine Peckham had sent her apologies and her farewell lunch was therefore postponed until the June meeting.
MINUTES OF (06) 1st MEETING
1 It was agreed to amend the minutes of the (06) 1st meeting on page 5, to replace the wording ‘mother’ with ‘pregnant woman’.
MATTERS ARISING
2 There were no matters arising other than for items already on the agenda.
CHAIRMAN’S ITEMS
MEMBERSHIP
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3 The Chairman reported that four positions for membership were to be advertised. After some discussion it was agreed that two positions, social anthropology and political science, should be sought under the general heading of social science; and one in the field of industrial experience in biomedicine. Also, the description of ‘cell biology’ should be altered to ‘cellular and molecular biology’. It would be desirable to attract a new member with expertise in stem cell biology.
4 It was agreed that the Membership Panel should review the current composition of the Council, including gender and age balance, and decide whether further expertise in either science or philosophy was needed. Professor Peter Smith and Professor Peter Lipton would join the Panel and Professor Strathern would remain as a member for the next meeting.
STAFFING (Reserved business)
MAIN BUSINESS
PROPOSAL FROM THE MEDICAL RESEARCH COUNCIL: ETHICAL REVIEW IN CHINA
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5 The Chairman welcomed Dr Tony Peatfield, Medical Research Council (MRC), to the meeting. Dr Peatfield explained that the MRC would like to have an overview of Chinese policies and practices for ethical review because the UK was developing research collaborations with China over the longer term. The Council discussed how the project could be taken forward.
WORKING PARTY ON CRITICAL CARE DECISION IN FETAL AND NEONATAL MEDICINE: ETHICAL ISSUES
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6 Professor Margot Brazier reported that at the eighth meeting of the Working Party it was agreed to adopt a new, more integrated structure for the Report. Peer review of the draft Report would now take place during April 2006. The Council agreed the new plan.
7 Since the last Council meeting a fact-finding meeting with four healthcare commissioners, managers and providers had taken place. The Working Party had also visited the Netherlands and France to discuss clinical, legal and ethical issues associated with critical care decisions in the newborn.
8 The plan for the Council to assess the revised draft Report at the June meeting was noted.
WORKING PARTY ON PUBLIC HEALTH: ETHICAL ISSUES
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9 Professor John Krebs reported that the Working Party had met for the first time on 26 January 2006 and that good progress had been made, both in identifying the areas for focus and agreeing procedural aspects of the work programme. He regretted to inform the Council that Professor Lord Michael Chan, Professor of Ethnic Health, University of Liverpool and a member of the Working Party had died in January 2006. Although it had been decided not to appoint a replacement for Professor Chan, the Working Party wished to appoint a member with expertise in infectious disease and possible names were currently being considered. Council members were asked for suggestions.
10 The Working Party had reviewed the draft terms of reference and several revisions and amendments had been proposed, to make them less restrictive. The Council agreed the revised terms of reference.
11 Attention was drawn to paragraphs 6 and 7 of the paper which outlined the consultation process. It was recognised that the timetable was tight and that the Council might need to sign off the consultation document through the post or by email.
WORKSHOP: BIOINFORMATION FOR FORENSIC PURPOSES
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12 The Assistant Director reported that the Workshop had taken place on 21 February 2006. A draft note of the meeting was attached at Annex B. The Council agreed that the Workshop had brought together a range of issues for discussion and had proved to be a very interesting and productive day.
13 It was agreed that the use of bioinformation for forensic purposes was an area that the Council should take forward. It was timely as there was currently a lot of public interest and there had been some high profile legal cases. Important issues included the accuracy and meaning in real terms of the statistics and the use of bioinformation in the fight against serious crime and terrorism. It was agreed that there should be regular contact between the Secretariat and Home Office officials.
14 The Council agreed that a working group should be established to carry out a short project of about a year in duration on bioinformation for forensic purposes. The Chairman and Secretariat would take this forward and develop terms of reference and membership as the first step. One possibility was to work in parallel with the French national ethics committee which is undertaking a similar project. It was noted that the Human Genetics Commission would be holding a citizens’ jury on bioinformation at the end of the year and would welcome any contribution from the Council.
FORWARD LOOK
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15 The Assistant Director introduced this paper which invited members to consider two new options to expand the ways in which the Council obtained ideas for future work. One idea was to expand the current form of the Forward Look meeting and invite a wider field of participants to allow for the broadest possible discussion. After some discussion it was 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, depending on other commitments.
16 It was suggested that further consideration should also be given to adding a new section to the website that invites suggestions for possible topics of future work. Members’ attention was also drawn to the Horizon Scanning Centre of the Office of Science and Technology (OST). This had recently established a Futures Analysts Network (FAN Club), whose next open meeting would be on 9 May 2006. If members were interested in attending they were asked to let the Secretariat know.
EXTERNAL RELATIONS STRATEGY
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17 The Director reported that an external relations strategy had been developed by the Secretariat and approved by the Council in 2002. Almost, four years on, the Secretariat had revisited the Strategy to consider whether improvements and adjustments could be made. The review aimed to strengthen the Council’s External Relations Strategy by ensuring it had more focus and a proactive approach to communication over the next three years. Additionally, following a suggestion by Rt Reverend Harries, the Secretariat had developed a ‘map’ of major bioethics organisations around the world. An electronic version of this document with hyperlinks would also be sent out with the next News Bulletin.
18 Members were asked to consider the objectives of the Strategy, and to comment on the Council’s current approach and what might be done in the future. Their attention was drawn to the work being done to strengthen links with MPs by producing a one page summary of Reports, encouraging members to give talks, an electronic newsletter and developing the Council’s website.
19 The Strategy was welcomed. It was agreed that more thought should be given as to how the Council evaluates and measures its progress. A considerable amount of work had been done on this for the Council’s five year funding bid and the feedback from the referees had been positive. The issue of managing the amount of information received by the Council was raised. It was suggested that contact might be made with academic institutes that teaches ethics/bioethics. For the Strategy generally, it was important to be inclusive of the whole of the UK, as for example no activities in Scotland were currently proposed.
DIRECTOR’S REPORT
FIVE YEAR FUNDING BID
20 The Director reported that the Chairman and she would be attending 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.
$1K GENOMES AND THE NEED FOR A STUDY
21 The Chairman reported that there had been a lively and interesting meeting held in Cambridge on 22 March with Professor Michael Ashburner, Professor John Sulston, Professor Peter Harper, Dr Alan Williamson and the Assistant Director. A brief note had been tabled. Attendees had discussed the rapid advances in genome sequencing which was making genome analysis cheaper and faster. It had been suggested that a $1k personal genome was unlikely, but not impossible, a more realistic proposition being a $10,000 genome. There had been agreement that it was important to debate the issue before the technology became a reality.
22 The Chairman said that the Human Genetics Commission had decided not to do anything further on this subject before 2010. This gave scope for Council activity without overlap. It was agreed that a half day workshop should be organised, possibly after the June or October meeting.
ETHICAL PRINCIPLES IN THE COUNCIL’S WORK
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23 The Assistant Director introduced this paper. Names for experts with a background in the social sciences had been received and had been discussed with the Council’s Chairman and Professor Strathern. The terms of reference for the project needed reassessment to make sure they were appropriate.
WORKSHOP: NEUROSCIENCES
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24 The Assistant Director introduced this paper and updated members on attendance. Several acceptances had been received in response to the Council’s invitation. He would discuss further suggestions for invitees with Professor Perry and the Chairman.
GENETIC SCREENING
25 The Director explained that resources had not been available to complete this project and so there had been a delay. It would be given priority in April. Professor Harper recorded his deep disappointment that completion had been outstanding for over a year.
BI-LATERAL MEETINGS 2006: CCNE AND NE
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26 The Director reported that the meeting with the Nationaler Ethikrat (NER) in Berlin would be held on 25th April. A meeting with CCNE had taken place on 30 January and a draft note of the meeting was at Annex A.
TO REPORT
ETHICS OF RESEARCH INVOLVING ANIMALS
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27 Members of the Council noted the paper.
FINANCIAL REPORT FOR YEAR TO 31 AUGUST(SUBJECT TO AUDIT)
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28 The Management Accounts for the period up to 31 August 2005 were received and noted.
COUNCIL’S REVISED DRAFT WORK PLAN FOR 2006
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29 The Council’s revised Draft Work Plan was received and noted.
QUARTERLY BULLETIN
Information (06) 03
30 This paper was noted.
WEB REPORT
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31 The web report figures were noted.
Last Updated Wed, 17 May 2006