Minutes of the Council meeting held on 25 June 1999
Wed, 28 July 1999
Council (99) 3rd Meeting
NUFFIELD COUNCIL ON BIOETHICS
Minutes of the Meeting held at 28 Bedford Square London WC1B 3EG
on 25 June 1999 at 10.30 am
PRESENT
Professor Ian Kennedy (Chairman)
Dr Anne McLaren, Professor Martin Raff,
Professor Duncan Forrester, Professor Albert Weale,
Dr Brian Newbould
APOLOGIES
Professor Martin Bobrow, Professor Brian Heap,
Lady Sonia Hornby, Derek Osborn,
Professor Dame Margaret Turner-Warwick
and Nick Ross.
SECRETARIAT
Dr Sandy Thomas, Susan Bull, Julia Fox
and Yvonne Melia.
The Chairman welcomed Yvonne Melia, the newly appointed research assistant, to her first meeting of Council. He reminded Council that Professor Derek Burke, a member of the Working Party on Genetic Modification of Crops would join Council at lunch in order to discuss the initial impact of the GM crops report following the launch four weeks ago. Richard Best, Director of the Joseph Rowntree Foundation would be invited to attend in October.
MINUTES OF (99) 3rd MEETING
1 These were agreed as an accurate record of the previous meeting.
MATTERS ARISING
2 The Next Working Party: this item had been overtaken by discussions at the Forward Look meeting.
3 Forward Look: One Day Meeting: this item would be dealt with under agenda item 2.4.
4 Annual Report: it was noted that this would now be produced at the end of the summer, rather than in April.
CHAIRMAN'S ITEMS
MEMBERSHIP
5 The membership of Council had been discussed at Council's 2nd (99) meeting and the Forward Look meeting. Professor Albert Weale reported on his discussion with Baroness Onora O'Neill concerning philosophers who might be invited to join Council. The Chairman suggested other possible members of Council for consideration.
6 The Chairman noted that three members of Council would be retiring at the end of the year, leaving a total of nine. It was desirable to have a larger group of up to 15. The names suggested by the Chairman were examples of people it might be desirable to have on Council and more such names were sought for consideration. The Chairman then invited members to suggest additional names. An advertisement inviting expressions of interest in Council membership would also be prepared by the Secretariat.
7 It was agreed that the Secretariat would circulate a note to Council requesting further suggestions within three weeks. Consideration would be made not only to the merit of prospective candidates, but also their capacity to attend. It would be desirable to have the new members in place before Council members retired at the end of the year.
GOVERNMENT REVIEW OF BIOTECHNOLOGY Council (99) 20
8 Council noted the outcome of the Government review on the regulatory oversight of biotechnology. Two new advisory bodies, the Human Genetics Commission (HGC) and the Agriculture and Environment Biotechnology Commission (AEBC) were to be established. The Human Genetics Advisory Commission and the Advisory Committee on Genetic Testing were to be subsumed into the new Human Genetics Commission. The Government's review had not proposed a national bioethics committee. It was agreed that this would be an appropriate time to reconsider the role of the Council in relation to the two new bodies. One of the distinctive characteristics of the Council was its independence in the light of the apparent lack of public trust in government advisory bodies.
DRAFT BUSINESS PLAN Council (99) 21
9 It was intended that the draft business plan should form the basis of a proposal to the Council's three sponsors, The Nuffield Foundation, The Wellcome Trust and the Medical Research Council. The need for the Council was now widely recognised and the current demands that Council were putting on the Secretariat meant that it needed to expand to be able to respond efficiently. It was agreed that core and peripheral activities of the Secretariat would need to be distinguished, and that priorities would need to be clearly identified. Staffing requirements could then be clearly linked to the two sets of activities. It was noted that as Council continued to publish reports an increasing amount of Secretariat time was involved in follow up activities.
10 The scale of issues confronting the Council was growing rapidly and if some of these issues were to be considered, more resources would be needed. Furthermore, if Council wished to respond rapidly to a new issue, additional funding would need to be sought from sponsors, and a note to that effect should be added to the revised draft. A revised draft of the business plan would be circulated rapidly to Council for approval prior to its submission to the sponsors. Council then considered whether the additional workload would entail more meetings. It was noted that much of the current work was carried out 'off stage' and did not relate directly to the meetings. It was agreed that if time was used efficiently, four meetings per year would remain sufficient. A clear distinction would continue to be made between those papers which were for Council to take note of and those for discussion.
REPORT ON FORWARD LOOK SEMINAR Council (99) 22
11 It was considered that the meeting had been very productive and had allowed Council members to stand back from immediate concerns. The issues identified and actions agreed would be taken forward into current and new work. It had also been important to examine the relationship of the Council with government and other bodies. The terms of reference of the Council would also need to be reconsidered, alongside reorganisation of the Secretariat.
12 A government advisory group, chaired by Dr Liam Donaldson, Chief Medical Officer, which would examine the implications of stem cell research within 12 months had been announced. There was discussion of whether a Council workshop would duplicate effort. It was noted that the Novartis Foundation would be holding a discussion meeting on the topic in late September. A workshop held during the government inquiry might be the most useful way for Council to contribute.
13 Council noted that the British Academy was considering the social and ethical implications of risk in response to the bovine spongiform encephalitis inquiry. The Royal Society was also considering risk. It was thought that it may be important to bring these organisations and others together in any one day meeting. It was agreed that the Director and Professor Albert Weale would discuss the matter further and report back to the Chairman.
DIRECTOR'S REPORT
GENETICALLY MODIFIED CROPS: Council (99) 23
THE SOCIAL AND ETHICAL ISSUES
REPORT ON LAUNCH AND FOLLOW UP
14 It was noted that the press conference had gone very well and that Nick Ross and Professor Alan Ryan had made excellent contributions. The coverage of the report had been mixed, with some articles firmly in favour of the report and others being highly critical. There had been a number of letters published from Council and members of the Working Party debating some of the responses to the report. It was noted that HRH Prince Charles did not appear to have welcomed aspects of the report discussing possible benefits for developing countries and that Professor Derek Burke had carried out an series of interviews on the Working Party's behalf in response. There was some discussion of whether the fact that the hard copy of the report was not available made a difference to public perception of the report, as people may only have been aware of adverse press coverage rather than the content of the report. However, the large number of hits (c. 4,000) on the website the day after the launch showed that many people had accessed the report in this way.
15 It was noted that the report was released into an exceptionally hostile environment. It was thought that the adverse publicity would have little long term effect on the Council's standing and that Council should take a long-term view, continuing to do what it believed in. Care would need to be taken that the outside interests of Council and Working Party members were known and it was agreed a more formal register of such interests would be prepared in the coming months. In addition, as it was difficult to predict in advance which areas would become controversial, it may be appropriate to list in future reports why Working Party members had been selected.
16 It was noted that it was difficult to put a complex ethical argument into a press release and that care needed to be taken with putting together press materials.
MAIN BUSINESS
ETHICS OF CLINICAL RESEARCH Council (99) 24
IN DEVELOPING COUNTRIES: PROGRESS REPORT
17 The draft Terms of Reference for this inquiry were tabled and amended. Council noted that the discussion paper was being drafted and would be published in September. The paper would be peer reviewed and signed off by a core group of Council members. The Director noted that the US National Institutes of Health and National Bioethics Advisory Commission were also examining these issues. It was proposed at last week's National Institute of Health workshop, attended by the Director, that the output of these three inquiries and others be brought together under a World Health Organisation initiative. Guidelines could then be drawn up to fill any gaps between, for example, the Helsinki Declaration and the guidance available and used by research ethics committees.
18 It was noted that additional funding could be available from the sponsors of the February Workshop to meet the additional costs of holding an inquiry with Working Party members from developing countries. There was discussion of whether representation should be sought from non-medical aid agencies. It was agreed that selection of a Chair was crucial and that the three names proposed were all suitable. The Secretariat would circulate details of proposed areas of expertise and members of the Working Party and Council would respond before the end of July.
WORKING PARTY INQUIRY ON GENES AND BEHAVIOUR
19 It was agreed that this topic would be run in parallel to the Ethics of Clinical Research in Developing Countries but approximately six months behind. It was also agreed that a Workshop should be held before the Working Party began. This would be on a smaller scale than the February Workshop and the output would be a paper for Council rather than publication of a discussion paper. The Workshop would be held in October and would explore and refine the topic and ways of working. It would be desirable to have potential Chairs of the Working Party at the Workshop. It was noted that Cold Spring Harbour had had a controversial Workshop on this topic and that the Director would contact Jan Witkowski, Director of the Banbury Centre to learn from their experiences.
FUTURE WORK Council (99) 25
20 It was agreed that the Workshop on Patenting would be suspended to allow the Workshop and subsequent Working Party on Genes and Behaviour to be conducted. Another topic for consideration was the Allocation of Resources and it was discussed whether this would overlap with the Royal Commission's inquiry on long term care. It was thought that it might be interesting to follow-up the Government's suggestion that privacy and confidentiality be considered.
21 The merits of holding a one-day workshop on risk were discussed. It was proposed that the workshop should not be about defining risk per se but about how to evaluate and communicate an understanding of it. It was agreed that the workshop should focus on safety rather than risk.
ANY OTHER BUSINESS
Y TOURING : PROPOSED GM PLAY ON GM FOOD
22 Council noted that the theatre company, Y Touring, was producing a play on GM crops entitled 'Sweet as you are'. Council members were specifically invited to attend one of three performances to be held in Edinburgh on 18 August, Norwich on 1 or 2 September and London on 3 September. The Secretariat would write to all Council members advising them of the above and alternative dates and Council members could then indicate which performances they wished to attend.
UK FORUM FOR GENETICS AND INSURANCE Council (99) 26
23 The UK Forum, of which the Council was a founder member, was now established and was planning its first annual general meeting on 26 July. Council members were to advise the Secretariat if they wished to attend the meeting.
IAB CONGRESS 2000
24 Council noted that this fifth IAB congress, a bi-annual meeting, would take place from 21-24 September 2000 at Imperial College, London. The Director is on the Planning Committee for this meeting and the Chairman and Baroness O'Neill were speaking at the initial plenary session.
MEETING DATES FOR 2000
25 It was agreed to continue with four meetings, plus an awayday. The start time of 10.30 would also be retained and if Council members had particular difficulties overnight accommodation could be arranged.
PROGRESS ON EDUCATIONAL MATTERS
26 The Director reported that the Secretariat would work alongside the Nuffield Curriculum Centre on the production of a shortened version of the GM report for use in schools. It was anticipated that this would be produced in time to be published at the January 2000 meeting of the Association of Science Education.
DATE OF NEXT MEETING
Friday 15 October 1999 at 10.30 am
Last Updated Mon, 7 June 2004