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5 The Director reported that the new five year period of funding would begin at the start of 2007. The Council reviewed the work programme originally proposed in the funding bid which had included specific follow up activities, the costs for which had been pruned. Three options were presented in the paper were:

a. the Council could confine its work to new ‘cutting-edge’ topics;
b. it could devote some of its resources to new topics but retain a proportion to pursue follow-up topics; or,
c. resources could be devoted exclusively to new, ‘cutting-edge’ topics but applications made to the sponsors for new funds for ‘one-off’ specific follow-up or other projects.

6 In conclusion, it was agreed that the Council generally favoured options 2 and 3, to be applied on a case-by-case basis.

FORWARD LOOK
Council (06) 39

7 The Assistant Director introduced this paper which asked for comments on a draft programme for the 2007 Forward Look Seminar. The paper also made suggestions for the topic of the Forward Look Lecture to be held on the previous evening.

8 The proposed topic of synthetic biology was agreed to be very interesting but possibly somewhat premature. However, it was a growing field and a possible topic for one of the breakout sessions. The topic of the $1k genome was put forward as a suitable alternative. It was crucial that the public lecture addressed the social and ethical issues as well as the scientific aspects.

9 A number of other topics were suggested for the breakout sessions. These included stem cells, rationing in the National Health Service and the use of mediation in healthcare disputes (see paragraph 19 below). Nanotechnology was also suggested but not taken up, as this had been a topic at last years Forward Look. Other suggestions were how best to treat people with untreatable psychological problems, preimplantation genetic diagnosis, and research involving human and animal chimaeras. It was agreed that a long list should be discussed in January. Members were asked to send any further suggestions to the Assistant Director.

WORKING PARTY ON NEUROSCIENCES: DRAFT TERMS OF REFERENCE
Council (06) 40

10 The Assistant Director reported that following the Workshop on ethical issues raised by neuroscience on 11 May 2006, the Council had decided to explore the possibility of carrying out work in the area of neurodegenerative diseases. A subgroup, comprised of Anatole Kaletsky, Professor Peter Lipton and Professor Hugh Perry had been established to consider the terms of reference and membership. Members agreed the draft terms of reference with one amendment.

11 It was agreed to hold an additional workshop focussing more narrowly on neurodegenerative diseases to refine the terms of reference and identify suitable members for the Working Party. A further workshop would provide a good opportunity to identify potential members of the Working Party and a Chair. It was suggested that it would be useful to have someone with a background in nursing and social work on the Working Party. It would be important to focus on the social issues and to ensure that undue attention was not given to the biological aspects. It was noted the National Institute for Clinical Excellence would shortly be producing a report on the science of neurodegenerative diseases which would be helpful to the Working Party. The Secretariat was asked to give consideration as to the timing and possible out sourcing of the project.

12 There was a query whether the topic of neurodegenerative disease fell within the Council’s terms of reference. It was agreed that the topic would fall into the category of recent developments in medicine, which meant amongst other things that people were now living much longer.

WORKING PARTY ON CRITICAL CARE DECISIONS
IN FETAL AND NEONATAL MEDICINE: ETHICAL ISSUES
Council (06) 41

13 The Chairman thanked Professor Margot Brazier for her skilled leadership and substantial input into the Report. Professor Brazier thanked the Deputy Director for her work as secretary to the Working Group, for her intellectual rigour, and her patience. The recommendations made by the Working Party were conclusions reached unanimously after rigorous debate. The issues were difficult and rightly charged with emotion. Professor Brazier recommended two topics which had arisen from the Report that merited further exploration by the Council. The first was rationing of healthcare. This would be explored to a limited degree by the Report on Public Health with regard to whether treatment should be withheld where people were not helping themselves. The second issue was the use of mediation in disputes over what constituted the best treatment, as sometimes occurred between medical professional and patients.

14 The plans for dissemination of the Report were noted. It was suggested that in addition to having an Early Day Motion in the House of Commons, it might also be useful to organise a seminar in the House of Lords where there would be a great deal of interest in the issues relating to critical care.

15 Members were asked to note the activities listed in paragraphs 11 and 12 and in particular the educational work planned by the Reaching Out to Young People Advisory Group. The short version of the Report would be available shortly after the Report was published.

WORKING PARTY ON PUBLIC HEALTH: ETHICAL
ISSUES
Council (06) 42

16 Professor Sir John Krebs introduced this paper which invited members to take note of the responses to the consultation, to comment on the current outline of the draft Report and on the arrangements for peer review. An outline of the chapters was attached at Annex A.

17 There had been 113 responses to the public consultation. An interim summary of the responses was at Annex C. At the fourth meeting there had been a fact-finding meeting with experts on the fluoridation of water and supplementation of food. On 26 October, there would a fact-finding meeting with experts on alcohol, smoking and infectious diseases. Members were asked to consider the proposed peer reviewers. Reviewers should be instructed to make an assessment of the Report as a whole and then to pay particular attention to the chapters falling within their area of expertise.

WORKING GROUP ON BIOINFORMATION FOR FORENSIC PURPOSES
Council (06) 43

18 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 Working Group had met for the first time on 25 September. Members had discussed the draft terms of reference approved at the Council’s June meeting and made some minor amendments. These changes were agreed. The Working Group had reviewed the proposed schedule and method of working and set dates for future meetings to be augmented where necessary, by fact-finding meetings. The consultation was due to close in January, with the launch of the Discussion Paper by the end of October. A draft of the Discussion Paper would be discussed by the Council at the meeting in March 2007.

19 The Chairman informed members that Dr Carole McCartney, a lecturer in Criminal Justice, School of Law, University of Leeds, had been recruited as an external project manager to act as Secretary to the Working Group.

DIRECTOR’S REPORT

ETHICAL REVIEW IN CHINA

20 The Director reported that the workshop on the ethical review of research was being arranged by the MRC with continuing input from the Council through membership of the steering group. This group would meet for the first time on 1 November and Professor Peter Smith and the Deputy Director would be attending.

ETHICAL PRINCIPLES IN THE COUNCIL’S WORK

21 The Director reported that Professor John Harris had agreed to oversee this project, which would be carried out with one of his research assistants.

COUNCIL TERMS OF REFERENCE

22 The Director reported that after some discussion and correspondence, the Funders had decided that they would prefer the Council to retain its original terms of reference.

BILATERAL MEETINGS 2007

23 The Director reported that the suggestion of a trilateral meeting to be held at 28 Bedford Square in 2007 had been agreed by CCNE and NE. The suggestion from NE was to hold it in June. The topics for discussion had yet to be determined.

REACHING OUT TO YOUNG PEOPLE
Council (06) 44

24 Professor Kenneth Calman asked members to take note of recent developments. Work was progressing well and members were invited to do as much as possible to publicise and promote the work of the Council. The Secretariat would be able to provide help where necessary and had produced a guide for members on arranging presentations at local organisations. The accessibility of the Council’s website to young people was discussed.

TO REPORT

ETHICS OF RESEARCH INVOLVING ANIMALS Council (06) 45

25 Members of the Council noted the paper.

FINANCIAL REPORT FOR YEAR TO 31 AUGUST(SUBJECT TO AUDIT)
Council (06) 46

26 The Management Accounts for the period up to 31 August 2006 were received and noted.

COUNCIL’S REVISED DRAFT WORK PLAN FOR 2006 AND 2007
Council (06) 47

27 The Council’s revised Draft Work Plan was received and noted