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Hugh Whittall

The Chairman welcomed the new members, Professor Sian Harding, Professor Alison Murdoch, Dr Bronwyn Parry and Professor Nikolas Rose to their first meeting.

This would be the last meeting for Dr Alan Williamson and on behalf of the Council the Chairman expressed thanks for his work and many contributions to the Council and wished him well for the future.

MINUTES OF (06) 2nd MEETING

1 It was agreed that the Minutes were an accurate record of the meeting held on 19 October 2006.

MATTERS ARISING

2 There were two matters arising not dealt with as items on the agenda.

• Membership – It had been reported at the last meeting that Baroness Elizabeth Butler-Sloss had written to resign as Chair of the Panel because of new commitments. The Chairman had subsequently written asking her to reconsider and in response she had agreed to review her position later in 2007.

• Ethical review in China – Professor Peter Smith and Dr Catherine Moody had attended a meeting of the China UK Research Ethics Steering Committee (CURE) that had been set up by the MRC.

CHAIRMAN’S ITEMS

APPOINTMENT OF NEW DIRECTOR

3 The Chairman introduced members to Mr Hugh Whittall who would be joining the Secretariat as the new Director on 1 February.

APPOINTMENT OF A REPLACEMENT FOR THE DEPUTY DIERCTOR

4 The Chairman reported that he and the Director of the Foundation were holding discussions with the new Director about the appointment of a replacement for the Deputy Director, whose secondment to the Council would end on 31 March 2007.

MAIN BUSINESS

FORWARD LOOK LECTURE AND SEMINAR Council (07) 01

WORK PROGRAMME

5 The Communications and External Affairs Manager reported that the holding of a biennial lecture on a topic that raised ethical issues was now part of the Council’s strategy for external affairs. A number of possible speakers had been approached but unfortunately had been unable to attend because of previous commitments. It was decided that because of the pressure of time, the lecture should be deferred until next year.

6 It was proposed that the first plenary session should be on the implications of the human genome project. Another topic being proposed was the use of microarrays in prenatal diagnosis. The Chairman, Professor Peter Smith and the Acting Director had attended a meeting in Cambridge with Professor Martin Bobrow and Dr Helen Firth on the subject and a note of the meeting was tabled.

7 It was agreed to invite Professor Bobrow and Dr Firth to speak at and participate in the Forward Look meeting. Others who could discuss the problems associated with genetic susceptibility testing should be invited to contribute to the discussion. It was confirmed that a named discussant should be identified for each topic.

8 Two additional suggested speakers for the session on rationing were Professor Julian Le Grand and Professor Karol Sikora. It was agreed that mediation could be removed from the programme as there would not be sufficient time to discuss the topic.

WORKING PARTY ON PUBLIC HEALTH: ETHICAL ISSUES
Council (07) 02

9 Professor Sir John Krebs summarised the Working Party’s progress, commented on the structure of the current draft Report and highlighted several points which would be discussed by the Working Party before agreeing a version that would be sent to the peer reviewers at the beginning of February. Most of the case studies required editing to reduce the level of scientific information and to bring out more clearly the ethical issues. It was noted that some of the draft conclusions and recommendations had yet to be discussed in detail by members. The Chairman of the Council invited members to comment on the draft Report.

WORKING PARTY ON CRITICAL CARE DECISIONS IN FETAL AND NEONATAL MEDICINE: ETHICAL ISSUES
Council (07) 03

10 The Acting Director reported that the launch of the Critical Care Decisions Report on 16 November had generated a high level of media interest. In the weeks approaching the launch, consultation responses from the Royal College of Obstetricians and Gynaecologits and the Church of England dating from June 2005 were reported in the Sunday papers. The Secretariat made the decision to lift the embargo a day early following the breaking of the embargo and arrangements were made to bring forward the planned radio and television interviews and to respond to further requests. The media briefing and the launch were well attended and the Report was featured on all the major broadcast outlets, achieving comprehensive coverage.

11 Some follow up action had taken place and more was planned. For example targeted letters had been sent to relevant organisations to draw recommendations to their attention. Of particular note was that the British Association of Perinatal Medicine had established a Working Group to revise the guidelines for the resuscitation of extremely premature babies, using the Report as a basis for discussion. Meetings were also being arranged with the targeted organisations. By 9 January, the Report had been downloaded from the website 8940 times.

12 The fact that reports were becoming longer was raised. It was agreed that the Council was tending to look at topics in more depth but that this should not automatically lead to longer reports. With current work, the Secretariat was adopting a more overt and stricter policy on page limits. It was suggested that consideration should be given to whether some information should be excluded from the printed appendices and instead only made available on the internet.

WORKING GROUP ON BIOINFORMATION FOR FORENSIC PURPOSES
Council (07) 04

13 This session was chaired by Professor Peter Smith, Deputy Chairman of the Council. The Chairman, in his capacity as Chair of the Working Group, reported that the next meeting would be on 22 January, when the Working Group would discuss the first draft of the Discussion Paper. The public consultation had been launched on 1 November, preceded by a press conference on 31 October. The launch had received very good coverage and the consultation was featured comprehensively in the media. To date there had been over 70 responses to the consultation and a summary would be presented to the Council at the March meeting. Members approved the draft outline of the discussion paper at paragraph 6 of the Council paper.

14 The Working Group had drawn up a short list of potential peer reviewers for Council approval. It was proposed that only four or five peer reviewers would be necessary because of the shorter length of the document. Council was asked to endorse or amend the names of the proposed reviewers and consider whether there was a need for a reviewer with more general scientific expertise.

15 After some discussion and identification of preferred peer reviewers, it was agreed that any further suggestions should be sent to the Secretariat by Monday 22 January, in time for the meeting of the Working Group. The final list should be approved by Professor Peter Smith.

WORKSHOP ON NEURODEGENERATIVE DISEASES
Council (07) 05

16 The Acting Director introduced this paper. At the meeting of the Council held in October 2006, it had been agreed to hold a workshop on neurodegenerative diseases. In discussion with a number of members and the Chairman, the Secretariat had prepared a list of potential attendees and speakers and a first round of invitations had been sent. Attendees would have expertise in ethics, the law, medicine, social issues and the perspective of carers or patients. The workshop would take place on 7 March. It was noted that the programme was designed to give an overview of the issues in the morning, with a focus on the ethical issues in the afternoon.

17 It was agreed that there should be a discussion at the March meeting of the Council, as to whether to set up a Working Party. Members were asked to let the Secretariat know of any further suggestions for participants and whether or not they would be able to attend.

ACTING DIRECTOR’S REPORT

TRILATERAL MEETING 2007

18 The Acting Director reported that the date of the Trilateral meeting had been agreed as 4 June 2007. Members of the CCNE and the NE had suggested two topics for discussion: the ethical issues in biometrics and the relationship between ethics, law and politics with respect to life science issues. The idea behind the latter topic was to compare the different social, political and constitutional traditions of the UK, France and Germany. The examples of the role of the HFEA in the UK and the inauguration of the new German Ethics Council in Germany had been highlighted as suitable for discussion.

19 After some discussion it was agreed that the latter topic was not sufficiently relevant to the main work of the Council. Instead, it was agreed that rationing and neurodegenerative disorders should be offered as alternatives, to obtain an international perspective on the ethical issues raised by these topics.

REACHING OUT TO YOUNG PEOPLE
Council (07) 07

20 The Communications and External Affairs Manager reported that the Reaching Out to Young People (ROYP) Advisory Group had met on 19 October 2006. The Group had discussed the current draft of the educational materials on animal research and the best approach to developing similar resources for critical care decision making in neonatal medicine. They had also discussed priorities for spending the funds available for education in the Council’s budget. The two preferred alternatives were an event to train teachers from specialist schools on how to run a one-day event based on Nuffield Council topics and the production of video clips that would form part of the educational materials being developed by the Council.

PRENATAL SCREENING

21 See paragraph 6 above.

TO REPORT

ETHICS OF RESEARCH INVOLVING ANIMALS
Council (07) 08

22 Members of the Council noted the paper.

FINANCIAL REPORT FOR YEAR TO 30 NOVEMBER
Council (07) 09

23 The Management Accounts for the period up to 30 November 2006 were received and noted.

COUNCIL’S REVISED DRAFT WORK PLAN FOR 2007
Council (07) 10

24 The Council’s revised Draft Work Plan was received and noted. It was agreed that the launch of the Bioinformation Discussion paper should be held in September and the Public Health Report in November.

QUARTERLY BULLETIN
Information (07) 01

25 This paper was noted.

WEB REPORT
Information (07) 02

26 The web report figures were noted.

Last Updated Mon, 2 April 2007