Minutes of the Meeting held on 29 January 2008
Thu, 8 May 2008
Council (08) 1st Meeting
NUFFIELD COUNCIL ON BIOETHICS
Minutes of the Meeting held at 28 Bedford Square
London WC1B 3JS on 29 January 2008 at 10.30am
PRESENT
Albert Weale (Chair)
Roger Brownsword
Amanda Burls
Richard Harries
Peter Harper
Ray Hill
Søren Holm
Anatole Kaletsky
Rhona Knight
Alison Murdoch
Bronwyn Parry
Hugh Perry
Nikolas Rose
Johnathan Wolff
APOLOGIES
Kenneth Calman
Sian Harding
Tony Hope
Peter Smith
SECRETARIAT
Hugh Whittall, Harald Schmidt, Katharine Wright, Carol Perkins, Caroline Rogers, Julia Trusler and Kate Harvey.
This was the last meeting for Kenneth Calman and Richard Harries. The Chair thanked both members for their valuable contribution to the Council. The Chair also paid tribute to the achievements of Bob Hepple as his predecessor and thanked him for his support and advice.
The Chair welcomed Amanda Burls and Jonathan Wolff to their first meeting.
MINUTES OF (07) 4th MEETING
1 It was agreed that the Minutes were an accurate record of the meeting held on 17 October 2007.
MATTERS ARISING
2 There were no matters arising not dealt with as items on the agenda.
CHAIRMAN’S ITEMS
GENERAL
3 It was the first meeting of the Council since the death of Peter Lipton and the Chair praised the combination of intellect and social skills that had made him such a valuable Council member. Members and the Secretariat held a minute’s silence as a mark of respect.
4 A tribute would be included in the Annual Report and members would have an opportunity to add anything when a draft was circulated for comment.
MEMBERSHIP Council (08) 01
5 The Chair introduced this paper which asked members to look at the general make-up of the Council, whether there were any gaps in expertise and consider what areas should be advertised for in 2008. It was agreed that there was no immediate need to fill vacancies, and that it would be appropriate to consider membership in light of the future work programme which would be discussed at the Forward Look meeting in May.
MAIN BUSINESS
WORKING PARTY ON PUBLIC HEALTH: ETHICAL ISSUES Council (08) 02
6 The public health Report had been published on 13 November 2007. The Assistant Director, Harald Schmidt, reported that the launch had been attended by around 150 people and there had been a lively debate following presentations by members of the Working Party. There had been questions from the perspectives of industry, campaign groups, healthcare professionals, policy-makers and students. Further to the distribution at the launch, copies of the Report and personal letters highlighting particular recommendations had been sent to relevant organisations. As of 10 January, the electronic version of the Report had been downloaded 49,250 times.
7 The Report had received numerous citations, including several by the Minister for Public Health, Rt Hon Dawn Primarolo, in the Faculty of Public Health Annual Lecture, and a number of mentions in Parliament in questions and debates relating to alcohol and water fluoridation. The Council had also received a number of requests for meetings from relevant individuals and organisations, and Lord Krebs and members of the secretariat had held a meeting with the Secretary of State for Culture, Media and Sport, Rt Hon James Purnell, in relation to alcohol licensing.
8 Follow-up activities would be taking place over the next 12-18 months to promote discussion of the issues in the Report and encourage policy makers to take up the recommendations. The Secretariat was currently looking into further dissemination activities, including conferences and other events at which the Council could have a presence, as well as arranging meetings with targeted organisations. Members were invited to let the Secretariat know of any suggestions for further dissemination and suitable meetings.
9 It was agreed in the discussion that the launch had been a very successful event, but it had been unfortunate that the media coverage had very much concentrated on binge drinking. It was suggested that the stewardship model used in the Report, might be borne in mind as an ethical framework for future work, and there was some academic interest in its plausibility and status.
10 In the discussion it was pointed out that how the Council followed through on its reports had two stages. The first was to actively promote and disseminate the Report and engage with policy makers in a planned and managed way. The second stage, after a period of 12-18 months of active promotion, was more reactive and involved finding conferences to attend and opportunities to submit extracts. Given the resources of the Council, it was recognised that there was only a certain amount of follow-up that was feasible and there had to be a point where a report could not be so actively promoted. It was suggested that the recent critical care decisions seminar, where relevant groups were brought together and encouraged to take the issues forward, maybe a useful closing off strategy (see paragraph 32 below).
WORKING PARTY ON ETHICAL ISSUES AND THE DEMENTIAS - UPDATE Council (08) 03
11 The Assistant Director, Katharine Wright, reported that the Working Party had met for the first time on 15 November 2007. The main part of the meeting was given over to an ‘open forum’ where all members present had the opportunity to put forward their general views. There had been a wide-ranging discussion, concluding with the identification of a number of broad areas for analysis listed in the paper. The Secretariat was currently producing the first draft of a consultation document, based on these areas. This would be discussed at the next meeting of the Working Party in February and an agreed draft would be brought to the next Council meeting in April. It was suggested that it might be helpful for some Council members to comment on the draft of the consultation paper before it went formally to Council. The Chair thanked Ray Hill, Alison Murdoch, Soren Holm and Nikolas Rose for volunteering.
12 The Working Party had made a number of amendments to the draft terms of reference. It was felt that the term ‘dementia’ or ‘dementias’, was more accessible than ‘neurological diseases affecting capacity’ and covered the same range of conditions. There was general agreement with the changes and members commented that they were pleased to see that the terms of reference were becoming more focussed and specific.
13 Particular areas of interest mentioned included the inappropriate use of neuroleptic drugs; the need for reference to the spiritual dimension of ‘person-centred’ or ‘whole-person centred’ care; and a wariness about the value of mild cognitive impairment as a diagnosis (the latter would be referred to in the context of the pros and cons of early diagnosis). It was noted that the pharmaceutical industry tended to take a reductionist approach, looking at the downstream benefits of new drugs, rather than a holistic approach, which could be immensely valuable.
WORKING PARTY ON ETHICAL ISSUES AND THE DEMENTIAS – OPTIONS FOR CONSULTATION Council (08) 04
14 The Assistant Director, Katharine Wright, introduced this paper which outlined some of the options being considered for widening the consultation process. The Secretariat had been exploring the possibility of carrying out a wider exercise in order to obtain the views of those who would not ordinarily respond to a formal consultation. These could include people with a diagnosis of dementia and carers of those with dementia.
15 Discussions were underway with the Alzheimer’s Society on how we might link in with their ‘living with Dementia’ project to seek the views of individuals with dementia and their carers. Advice had also been sought from specialist organisations on how to reach the general public. Both organisations recommended small group discussions and emphasised the importance of providing sufficient background information to inform participants before seeking views on specific issues. The possibility of a central ‘stakeholder’ event had also been discussed, where representatives of key bodies could be invited to discuss their views on the consultation document along with members of the public. Funds to carry out the work had been identified in the current budget and the results of the exercise would be carefully evaluated.
16 There was general agreement that the Working Party should go ahead with innovative consultation techniques, by way of a pilot for future consultations. A number of concerns and issues were raised about small group discussions, in particular, that individuals in such a setting might hesitate to express some personal views for fear of being criticised and judged. It was therefore suggested that some one to one interviews might also be considered. It was noted that focus groups could work less well on larger issues and it was therefore important to have a skilled facilitator and to carefully prepare the material and questions in advance. It was likely that the groups would produce a lot of irrelevant information and it would be important to filter the data and be selective. It was noted that it would be particularly useful to obtain input from younger people, for example 6th formers, who might provide interesting insights into recognising illness, and the stigmas associated with it.
HEALTHCARE RATIONING Council (08) 05
17 The Council had considered issues raised by healthcare rationing at its 2007 Forward Look meeting and at a separate workshop held on 14 December. Notes of both meetings were attached to the paper as annexes. The main purpose of the December workshop had been to enable the Council to consider whether, within its terms of reference, a full report into rationing should be carried out, and, if so, what issues might be considered. Delegates at the workshop had agreed that the basic issue in healthcare rationing had remained relatively unchanged. They involved the problem of trying to provide, at the same time, comprehensive care; high quality care; and care available on the basis of need alone.
18 After some discussion it was agreed that this issue should be further developed by concentrating on the idea of personalised medicine, looking at genetic technologies, the consumerist culture and conflicting responsibilities of the community versus individual rights. It could be discussed further at the next Council meeting, at which time it could be considered alongside issues for the Forward Look meeting in May.
FUTURE WORK HORIZON SCANNING AND FORWARD LOOK MEETING 2008 Council (08) 06
19 The Assistant Director, Harald Schmidt, explained that the new future work horizon scanning sub-group had developed an initial long and short list of possible future topics. Members were asked to review the lists of possible future topics and decide on three or four areas that should be explored at the Forward Look workshop in May. It was important in considering which topics to discuss whether the Council could distinctively contribute to the debate.
20 In discussion it was suggested that there was no new biomedical advances in the topic of treatment and enhancement that would warrant including it at the workshop. In relation to chimera/human hybrids it was noted that true hybrids were not currently in the Human Fertilisation and Embryology Authority’s (HFEA) remit and, although all possibilities were to be added to the new Human Fertilisation and Embryology Act, through regulatory powers, there had been no serious ethical discussion about this particular issue. It was agreed that there was not enough material for a working party, but there may be scope for joint work on the subject, for example, with the HFEA’s ethics and law committee. It was agreed that synthetic biology was an important issue but not a priority and it was not clear what specific ethical issues the topic raised.
21 It was agreed that the topic of nanotechnology should be included. There were difficulties with consent and deep uncertainties about the technology. It was also agreed to include cell banking and donation, volunteering and payment which could, to some extent, be linked. As agreed in the previous discussion on healthcare rationing (see Council (08) 05 above), personalised medicine could also be included as a topic for discussion, subject to the outcome of further discussions at the next Council meeting.
22 It was agreed that for the chosen topics, short papers should be developed to help the Forward Look workshop think about the issues fully. Members were asked to volunteer if they would be interested in helping.
23 The papers also asked members to consider whether topics not suitable for a full report, could be addressed in a different format, such as “fact-sheets” or “briefing-papers”. It was agreed that this discussion should be postponed.
DIRECTOR’S REPORT
STAFFING
24 The Director reported that Kate Harvey had now joined the Secretariat as a full time Information Officer
REACHING OUT TO YOUNG PEOPLE Council (08) 07
25 Rhona Knight reported that the Reaching out to Young People Group had met on 17 October 2007. As had been discussed at the last Council meeting, the Group was moving ahead with its initiative to involve young people in the Council’s consultations. It was intended to recruit and train teachers at 20 specialist schools in the London area to take part in the consultation on dementia in the spring/summer. Concern was expressed that the exercise was exclusively London focussed, but it was explained that this was a pilot exercise that for pragmatic reasons was not being held regionally. Invitations were due to out to schools in March.
26 Members were informed that unfortunately, the grant application for the Ethical Emporium website, led by the Nuffield Curriculum Centre, which would have provided media teaching resources based on the Council’s reports, had not been successful. Some feedback was being sought and the Group would be discussing, at its next meeting, its future direction.
27 It was reported that the Group and colleagues at the Nuffield Curriculum Centre believed that there was a real need for the Council to continue its work in supporting schools in teaching ethics, driven particularly by recent changes to the science and citizenship curricula. In order to continue with the current workload and possibly increase activities in future, further resources would be helpful. There were funds in the Council’s budget to employ a further part-time member of staff and it was agreed that an Education Officer be recruited on a limited term basis to join the Secretariat.
HOUSE OF LORDS DEBATE
28 It was reported that during the Committee and Report stages of the Human Fertilisation and Embryology (Amendment) Bill in the House of Lords, amendments had been proposed by Lords Alton and Brennan, and by Baroness Williams that would introduce a statutory National Human Bioethics Commission. The amendments were withdrawn following debate on both occasions, but it is likely that the issue will be considered again when the Bill is in the Commons. The Government’s position has consistently been to resist calls for a National Bioethics Commission on the grounds that the area is already well served with various bodies, including, the NCOB, providing advice on a range of ethical issues. Some inaccurate statements had been made about the Council during the debates, but generally the many references to the Council had been very favourable, referring in particular to its independence and the quality of its reports.
TO REPORT
WORKING GROUP ON BIOINFORMATION FOR FORENSIC PURPOSES Council (08) 08
29 The Senior Research Officer, Caroline Rogers, reported that there was continued interest and comment in the media and law journals. A selection of media and other coverage was included at Annex A and it was noted that the Report had been downloaded around 15,000 times.
30 Members of the Secretariat had met with Professor Peter Hutton, Chair of the Ethics Group of the national DNA Database to discuss the Report and the reasoning behind the recommendations in detail. A seminar had also been held in December with members of the British Academy of Forensic Sciences, who had been generally supportive of the Council’s position on the National DNA Database and its conclusions about the use of fingerprint evidence in court. A further invitation had been received to speak at an FBI Symposium on Genetic Privacy and Familial Searching in Washington and Graeme Laurie had spoken at the Constitution Committee enquiry into surveillance and data.
31 Further follow-up work would be planned over the coming months, with a review of the position about one year after publication of the Report.
CRITICAL CARE DECISIONS IN FETAL AND NEONATAL MEDICINE: ETHICAL ISSUES
32 The Assistant Director, Katharine Wright, reported that a seminar to discuss the Council’s recommendations in the Critical care decisions Report had taken place on 13 December. The aim of the event had been to encourage cooperation between the various organisations that the recommendations had been aimed at. It was felt that bringing the relevant organisations together had been a very worthwhile exercise and would encourage cooperation. It was agreed that holding similar seminars may be a more general signing off approach that should be considered.
FINANCIAL REPORT FOR YEAR TO NOVEMBER Council (08) 09
33 The financial report was received and noted.
COUNCIL’S DRAFT WORK PLAN FOR 2008 Council (08) 10
34 The Council’s Work Plans were received and noted.
ANY OTHER BUSINESS
35 It was noted that the next Council meeting had been moved from 25 March to 1 April.
QUARTERLY BULLETIN Information (08) 01
36 This paper was noted.
WEB REPORT Information (08) 02
37 The web report figures were noted.
Last Updated Thu, 8 May 2008