Minutes of the meeting held on 8th September 2005
Thu, 8 December 2005
PLFN (05) 6th meeting
NUFFIELD COUNCIL ON BIOETHICS
WORKING PARTY ON THE ETHICS OF PROLONGING LIFE IN FETUSES AND THE NEWBORN
Minutes of the sixth meeting held at 28 Bedford Square, London WC1B 3JS on Thursday 8th September, 2005
PRESENT:
Professor Margaret Brazier OBE (in the Chair); Professor David Archard; Professor Alastair Campbell; Professor Linda Franck; Professor Erica Haimes; Dr Monica Konrad; Professor Catherine Peckham CBE; Professor Charles Rodeck; Ms Anne Winyard; Professor Andrew Whitelaw
APOLOGIES:
Professor Neil Marlow; Ms Bonnie Green; Dr Stavros Petrou; Dr Philippa Russell CBE; Professor Sandy Thomas
SECRETARIAT:
Dr Catherine Moody; Mun Keat Looi; Caroline Rogers; Harald Schmidt; Clare Stephens
INTRODUCTION
1 After welcoming members of the Working Party, Professor Brazier thanked the current and former secretaries Clare Stephens and Joslyn Attico for their hard work in making the arrangements for the recent meetings and fact-finding visits. The meeting would be used to continue the discussion of recent drafting and for a briefing prior to the inter-faith workshop being held that afternoon.
MINUTES OF THE FIFTH MEETING
2 Approval for the minutes of the 5th meeting held on 31st August would be sought at the meeting on 10th November 2005.
Matters Arising from the 5th meeting
3 Arrangements for a number of visits and meetings were discussed. Members noted that Jane Fisher, the Director of Antenatal Results and Choices, would be attending the next meeting of the Working Party.
4 Professor Brazier thanked members for providing comments on the drafting from ECSITE, in preparation for the workshops with schools scheduled for late 2005 and during 2006.
REMIT OF THE WORRKING PARTY AND FRAMEWORK OF THE REPORT
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5 The remit of the Working Party was re-examined in light of discussions on the framework for the working version of the Report, which had commenced at the fifth meeting. It was agreed that the terms of reference remained appropriate and a new framework for the chapter structure was endorsed. The new framework set out to distinguish the current state of play from future possibilities. It allowed the Working Party to address some events before birth as well as clinical practice in relation to the newborn and separated out the context for the social sciences from day-to-day social experience. It set out the current legal framework, then moved to discuss ethical, social and economic issues, then revisited the law to assess whether any ensuing proposals could be translated into action. Members warmly welcomed the new plan. It would help to amplify the discussion of wider societal aspects, such as equity and justice. Discussion included whether the title for the Working Party needed modification and a number of replacement titles were suggested. The need for change was endorsed and Profess Brazier agreed to present the final choice to the Council at the meeting held in October.
6 Topics discussed included the extent to which research should be included in the Report. Amongst other observations, it was noted that neonatal medicine had been criticised for pushing the boundaries of treatment, yet improving treatment was a common goal for all areas of medicine. It was agreed that discussion of the enrolment of the newborn in clinical trials, the difference between research and treatment and what happened in emergency situations should be included in the Report. The likely impact of the forthcoming national informatics programme should also be highlighted. This programme would make access to data from the newborn far more feasible, yet raise issues of ethics and consent.
REPORT FROM FACT-FINDING MEETING WITH THOSE INVOLVED WITH BLISS
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7 Members were asked to endorse the draft note, to enable the Secretariat to forward it for comment to the participants in the recent meeting with those involved with BLISS.
DISCUSSION OF DRAFTS CONTRIBUTED BY MEMBERS
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Current regulation and guidance
8 The drafting on current regulation and guidance was discussed and general feedback was given on overall presentation and specific points. One suggestion offered was that the introduction should describe how the law is based on general principles, then comment that in reality it is rather pragmatic and includes post-hoc rationalisation and that processes are iterative. Within social science and anthropology, a similar tension could be found between principles and what had actually happened in particular cases. The generality of this situation might be commented upon in the Introduction section (Chapter 1).
Social and ethical issues
9 Professor Brazier re-opened the discussion on social and ethical issues, which had begun at the fifth meeting. On ‘the public good’ it was agreed that a definition of the term QALY should be given and some concrete examples provided. The Secretariat would provide some drafting. New examples might also need to be derived. On ‘the quality of life’, members noted that the emphasis thus far had very much been on the premature baby. It was important also to discuss babies born at term, as well as the consequences later in life for both types of survivor. The situation of the child who survived with very serious disabilities should not be avoided. The section also needed to include the structure of support and current provision for young people with disabilities. The ethical issue of whether disability in society was a social construct was a very important thread that ran through many of the discussions. The point needed to be made that society responded less emotively to a child growing up with disability than to a premature baby. There was also an issue of whether there was societal consistency with regard to financial provision and the effort expended on the newborn, compared with the older child. Was it ethical to invest so much in prolonging the life of the newborn, when so few resources were available to the same individual by the time they were a teenager with disabilities?
10 Different styles had been used for different sets of drafting. These could be adjusted later by the Secretariat, with advice from members, as agreed at the fourth meeting. Members were asked however to ensure that their drafting was properly referenced. The Secretariat would send reminders to the Working Party on the deadlines and requirements for drafting.
BRIEFING FOR THE INTER-FAITH WORKSHOP
11 Some background information was provided. The Working Party noted that issues of faith contained both ethical and social dimensions were bound up with broader cultural factors. Complexity was added by the existence of multiple versions of the same religions. A number of ideas and questions were highlighted for members to consider. These included rebirth or reincarnation within the Hindu or Buddhist tradition and their impact on medical practice. For Buddhists, notions of the future were embedded in beliefs about the past. Thus, account was taken of the deceased, in addition to the mother, the fetus and the newborn. The notion of Karmic identity concerned the fetus as a cyclical continuity of a past person. Who acted as the conduit of beliefs? Might this be the parents themselves or a family mediator? How were these views expressed? Might it not matter if life was discontinued, since there were many other lives to be lived within the cycle? For Judaic and Muslim beliefs it would be useful to gauge the levels of social awareness within the medical unit and to understand better how such beliefs were expressed and communicated. It would be important to listen for evidence of communication, and lack of communication during the discussions. There were also issues of how experiences of faith, guilt and atonement played out in medical encounters and beyond.
12 The programme for the afternoon was outlined and agreed to provide enough flexibility to allow the guests of the Working Party to voice their views and concerns in any area relevant to the work. Some very clear contributions had been provided which could be used as a starting point.
ANY OTHER BUSINESS
13 There was none.
The next meeting will take place at 10.00 am on Thursday 10th November 2005
Last Updated Thu, 8 December 2005