Minutes of the Meeting held on 26 June 2008
Thu, 23 October 2008
NUFFIELD COUNCIL ON BIOETHICS
Minutes of the Meeting held at 28 Bedford Square
London WC1B 3JS on 26 June 2008 at 10.30am
PRESENT
Albert Weale (Chair)
Roger Brownsword
Amanda Burls
Sian Harding
Peter Harper
Ray Hill
Søren Holm
Rhona Knight
Alison Murdoch
Peter Smith
Jonathan Wolff
APOLOGIES
Anatole Kaletsky
Bronwyn Parry
Hugh Perry
Nikolas Rose
SECRETARIAT
Hugh Whittall, Harald Schmidt, Katharine Wright, Carol Perkins, Julia Trusler, and Kate Harvey.
This was the last meeting for Julia Trusler and the Chair thanked her for her contribution to the Council’s work.
MINUTES OF (08) 2nd MEETING
1 It was agreed that the Minutes were an accurate record of the meeting held on 1 April 2008.
MATTERS ARISING
2 There were three matters arising not dealt with as items on the agenda.
Human Fertilisation and Embryology Bill (paragraphs 5 to 10) – The Director reported that the amendment, previously debated in the House of Lords, to introduce a national bioethics commission had not been carried through to the Commons committee stage. There had been an amendment, later withdrawn, to set up a Parliamentary Bioethics Committee, but this was to focus on issues that arose in the context of the Human Fertilisation and Embryology Bill.
Ethical Review of the Council’s publications (paragraphs 20 to 22) – The Council was waiting for comments from Professor John Harris and Sarah Chan. It was expected that the material would be finalised very shortly and then placed on the Council’s website.
Briefing papers (paragraphs 23 to 25) – At the April meeting it was agreed that the Secretariat would look further at the possibility of developing briefing papers or other outputs. This had now been incorporated into the Director’s strategy paper.
CHAIRMAN’S ITEMS
MEMBERSHIP Council (08) 17
3 The Chair reported that it had been decided at the Council meeting in January to postpone considering membership until the future work programme had been discussed at the Forward Look meeting in May. The paper asked members to look at the general make-up of the Council in the light of that discussion and also recent changes in membership, and consider what areas of expertise should be advertised for in 2008.
4 Members agreed the list of areas to be advertised as outlined in the paper. It was agreed that philosophy and theology should be listed separately. It was noted that there was a need to be very careful when approaching people who had previously applied and not been successful.
REPORT ON THE MEETING WITH THE NUFFIELD FOUNDATION TRUSTEES
5 The Chair reported that the Director and he had had a very constructive and supportive meeting with the Nuffield Foundation Trustees. The Trustees had mentioned the question of influence and this issue was also raised in the strategy paper. A meeting with the three funders would be taking place on 1 July.
MAIN BUSINESS
WORKING PARTY ON ETHICAL ISSUES AND THE DEMENTIAS Council (08) 18
6 The Assistant Director, Katharine Wright, introduced this paper. The consultation paper had been published on 14 May and had received considerable media coverage. The paper had also been mailed out to more than a thousand individuals and organisations. Feature articles had been accepted by the Journal of Dementia care and the British Journal of Nursing. The closing date for responses was 31 July and 38 responses had already been received.
7 The Secretariat, in consultation with Tony Hope, who was chairing the Working Party, had also produced a shortened ten-page version of the consultation paper, aimed at people who preferred a briefer document, which may include those with relatively early-stage dementia. The consultation was also being actively promoted with help of the Alzheimer’s Society, with the intention of gaining the direct input of people with dementia and those involved in day-to-day caring.
8 There would also be a one-day fifty-person deliberative event in Birmingham over the summer, in order to gain the input of members of the public not directly affected by dementia. This would be a pilot project and the Working Party was aware of the need to report back to the Council on whether the input received from this event was of significant benefit in developing their report.
9 A fact finding meeting would be taking place on 10 July. A number of ‘frontline’ individuals (person with early-stage dementia, family carer, GP and other health professionals, lawyer, care-home inspector) had been invited to share their experiences and concerns with members of the Working Party, who would be joined for the day by a number of additional ethicists to discuss the ethical issues raised, with the aim of beginning to identify an underpinning ethical framework.
10 Council members were asked whether they would be happy for the draft report to be sent out for external peer review at the same time as to Council members. The Working Party would then be able to consider both Council and peer review comments in their February meeting. It was suggested that this would depend on the shape and quality of the report as some had been substantially altered after being seen by the Council. Moreover, peer review comments may not be so helpful if they had commented on a version that was then altered significantly by Council. It was agreed that a framework of the areas to be covered by the Report would be provided for the October meeting, and that it would be helpful if the Council could see an earlier draft in November/December, with the aim of this being before the peer review process.
PERSONALISED HEALTHCARE Council (08) 19
11 The Assistant Director, Harald Schmidt, introduced this paper. Following the Council’s 2008 Forward Look seminar, it had been decided to proceed with establishing a Working Party on personalised healthcare: ethical issues. A list of possible Working Party members was at Annex A and draft Terms of Reference were at Annex B. A verbal update was provided regarding progress with identifying a chairperson. It was suggested that one area of technology that was not covered sufficiently by the proposed membership was imaging and suggestions for suitable individuals were made. Members were asked to send any further suggestions to the Secretariat.
12 The Secretariat had reviewed the time required for producing a report and Annex C set out a way that reduced the usual time from 21/22 months to 16/17 months. It was felt that this schedule was the most condensed method for production. It was proposed that instead of the usual background paper the Secretariat would produce an early “Zero-Draft” of the report for review by the Working Party, and while members would be free to add drafting themselves, the primary drafting responsibility, in light of the Working Party’s discussions, would remain with the Secretariat. It was hoped that this would enable substantial work on the actual report to begin from the very first meeting. Members were asked to comment on themes included in the “Zero-Draft” at Annex D and the following comments were made:
• There was some concern over the title ‘personalised healthcare’ as this could imply that the rest of healthcare was impersonal. Suggestions for change included ‘the individualisation of healthcare’ and ‘individualised medicine’
• It was suggested that the technology was not new, but the report could address new developments in technologies that were already there. The report could look at the consequences of extending technology, not the technologies themselves.
• The key element that individuals were becoming consumers was not coming through clearly enough
• A lot of medical technology could claim to lead to a greater personalisation of healthcare. A new element was the access to knowledge which could lead to people seeking certain kinds of diagnosis and treatment and the resulting tensions in the healthcare system
• It was suggested that there must be a strong analysis of the validity of the claims made about the relevant technologies. There would be a need to hear from people who could advise on how they could be applied in the health service
• There was a need to think about the predictive validity of diagnostic testing for individuals rather than populations. It was noted that with some cancers, markers from tumours could be identified which could then result in treatment being tailored. For example with breast cancer, four main causative links had been identified which meant that drug regimes could be designed depending on which system was driving the tumour
• There was a major issue around preventive rather than curative medicine and an important element was the implications of individualising risk
• It was suggested that a further chapter could be used to highlight issues of cultural change and in particular the following three things: firstly that the range of healthcare products will expand and those who have the resources will take advantage; secondly, that there was a big cultural shift towards emphasising patients’ responsibilities, in addition to rights, as more was known about preventing and managing disease; and thirdly, much health care was in fact provided in an impersonal way, and there may be something positive about making services more personalised
• There were interesting issues about how you conveyed the complex information that accompanied certain screening tests and around what tests should be provided and when
• There could also be responsibilities as well as rights, for example whether people who were tested should then be obliged to feed the information back into the system
• An important element was the identification of an individual’s risk of disease and response to treatment. It was suggested that the Working Party should include someone who was familiar with how health services were implemented
• The project on personalised healthcare had evolved in the context of discussions around rationing. Members had earlier agreed that the effects of developments in personalised healthcare would be taken up again in this project, and in particular issues around linking access to treatment to participation in personalised schemes should be considered
13 It was agreed that the “Zero-Draft” was a helpful starting point and it was very useful to have a briefing document to illustrate the technologies involved.
FORWARD LOOK 2008 Council (08) 20
14 Catherine Joynson reported that Professor Hermerén’s Forward Look lecture on 7 May and the reception afterwards had been very well attended and feedback had suggested that the event could generally be regarded as a great success. At the Forward Look Seminar, on the next day, the Council had been joined by twenty invited guests. Presentations and discussion had focussed on three topics: nanotechnology; volunteering, donation and payment in clinical practice and research; and the use of cord blood and other cell banks. It had been followed by a meeting of the Council members to discuss which of the three topics, and personalised healthcare, warranted further examination by the Council. It had been concluded that the project on personalised medicine should proceed, subject to consultation with other members of the Council not present at the meeting. It had also been proposed, and it was agreed, that a Workshop on the topic of donation, volunteering and payment would be held later in the year to explore the possibility of future work in this area.
FORWARD LOOK LECTURE 2009 AND BEYOND Council (08) 21
15 This paper was introduced by Harald Schmidt and members were invited to consider whether the forward look lecture should continue to be given annually and in the current format, or whether alternative forms should be explored. The paper outlined three possible alternatives which included inviting a speaker to talk about a subject more or less of their choice; inviting a high-profile speaker to address a topic that was also on the agenda of the forward look meeting; or inviting a high-profile speaker to talk about their top issues of the day. It was suggested that the lecture worked very well as an external relations event with stakeholders, and that it should become an annual event. Members were asked to forward any suggestions for names and their associated topics to the Secretariat. It was agreed that 2011, the Council’s 20 year anniversary, would be an appropriate time to have a major retrospective and prospective event.
STRATEGY PAPER Council (08) 22
16 The Director introduced this paper which considered the strategic direction of the Council for the remainder of its current funding period. The Council was now 18 months into its current 5-year funding period and it was felt an appropriate time to examine the focus of the Council’s activities and consider ways in which the Council could improve, extend or expand on its current work.
17 It was acknowledged that the starting point for the consideration of the Council’s strategy or work programme must be its terms of reference. Members’ attention was drawn to the SWOT analysis to help consider which areas of the Council’s work should be prioritised, or in which ways it might extend its activities. It was noted that the budget granted for the current funding period was greater than the previous funding period, but the number of staff had not increased and there was an under spend in the first year which meant that there was an opportunity to extend the work of the Council. There were several options identified in the paper to develop the current work programme and a proposed approach was outlined at paragraph 17. Points 1-7 could be achieved with little difficulty within the current budget. Point 8, which proposed the recruitment of further staff or fellows, would push the current budget and office capacity to its limits. Members discussed the paper and the following comments were made:
• One of the major strengths of the Council was its reports and there was a need to maintain a sufficiently high volume of high quality activity. There were some concerns that there was currently a hiatus in activity, as the next report wouldn’t be published until July next year. Three reports in two years would provide more of a cushion.
• Producing more reports would not necessarily deal with all the weaknesses identified in the SWOT analysis in that a wider audience would not necessarily be reached. One possibility was having a journal, although this would involve longer term funding.
• A possibility was collaborating with other research councils who were better embedded in different communities.
• It was acknowledged that it was difficult to raise your profile in the wider community. A higher profile with decision makers could be achieved by having a mechanism for responding to specific issues that arose (similar to some national bioethics commissions), adding more to what the Council gives to policy making.
• It would increase the Council’s profile to respond to events as they occur. Proactively engaging with other organisations could give an ethical dimension to their reports and increase the profile in academia.
• There were dangers in responding too quickly and it might be useful to consider further where the Council could position itself in the national bioethics debate. There may be merit in approaching the chairs of groups and committees to find out what issues they were concerned about. If issues emerge that are of common interest, then a report or briefing document could be prepared depending on the issue.
• A rapid response strand could be a helpful way of bringing rational debate to acute issues.
• Joint activities would play to strengths and weaknesses. One possible organisation to collaborate with was the Academy of Medical Sciences whose reports were becoming increasingly influential. The output would be different if it was with another organisation.
• The Council should focus on things that it was best at and perhaps increase the number of reports in conjunction with other organisations.
• Short term responses, could result in a loss of credibility if the Council got it wrong.
• More focussed interventions, such as the Bioinformation Report, were a significant possibility.
• There were arguments for doing more follow-up. For example, the subject of GM crops was resurfacing and it was built on work that had already been done. It was suggested that there would need to be a tight control over follow-up as the number of reports increased along with the possibilities.
• It was noted that the number of important and interesting topics was increasing, not diminishing.
18 It was agreed that the extra resources should be allocated to increasing the output of the Council. Firmer proposals on how this could be achieved would be discussed at the October Council meeting, bearing in mind the various observations made by Council members. The funders would be kept in touch with any plans.
REACHING OUT TO YOUNG PEOPLE
19 Rhona Knight, the Chair of the Reaching Out to Young People Advisory Group (ROYP) reported that the Secretariat had felt there was a need to take stock and reflect on the direction on the ROYP Group. The paper included proposed revised membership of the Group, suggested terms of reference and the findings of some scoping research to inform future activities.
20 There were a large number of organisations involved in the area and given that the Council’s resources were quite small, there would be a need to do something quite focussed that would make a difference. It was acknowledged that teachers were in a difficult position, as there was a lack of focus in the area and they were bombarded with information. Teachers needed help that was targeted and avoided duplication.
21 It was suggested that cut down versions of the Council’s reports, focussed on deliberation and reasoning, may be useful as well as having a couple of standard presentations prepared that could be given to schools.
22 It was agreed that ROYP Group should be reconstituted as outlined in the paper. It was suggested that instead of having one or two young people on the Group it may be better to have a number of individuals who could perhaps act as a reference group, contacted by email.
DIRECTOR’S REPORT
PERSONNEL
23 The Director thanked Julia Trusler for all her hard work and wished her well in her new post.
24 GM Crops - The Director reported that the issue of GM Crops was again very prevalent. The Report was several years old and the Secretariat was in the process of preparing some briefing material to respond.
25 Declaration of Helsinki – It was noted that the Declaration of Helsinki was currently being revised and a draft response to the WMA consultation would be circulated for comment.
TO REPORT
WORKING PARTY ON PUBLIC HEALTH: ETHICAL ISSUES
26 Harald Schmidt reported that the Secretariat was continuing to attend conferences and give presentations. It was noted that there had been over 100,000 downloads to the Report so far this year. The Secretariat was currently planning a Parliamentary event and there would be a reunion dinner in November.
WORKING GROUP ON BIOINFORMATION FOR
FORENSIC PURPOSES
27 Katharine Wright reported that follow up work was continuing and there had been a number of meetings and presentations.
FINANCIAL REPORT FOR YEAR TO APRIL 2008 Council (08) 24
28 The financial report was received and noted.
COUNCIL’S WORK PLAN FOR 2008 Council (08) 25
29 The Council’s Work Plan was received and noted.
ANY OTHER BUSINESS
30 There was no further business.
QUARTERLY BULLETIN Information (08) 03
31 This paper was noted.
WEB REPORT Information (08) 04
32 The web report figures were noted.
Last Updated Thu, 23 October 2008