Minutes of the meeting held on 22 September 2004
Wed, 16 February 2005
PLFN (04) 1st meeting
NUFFIELD COUNCIL ON BIOETHICS
WORKING PARTY ON THE ETHICS OF PROLONGING LIFE IN FETUSES AND THE NEWBORN
Minutes of the meeting held at the Nuffield Foundation
28 Bedford Square, London WC1B 3JS
on Wednesday 22 September 2004
PRESENT
Professor Margaret Brazier OBE (in the Chair)
Professor David Archard
Ms Bonnie Green
Professor Erica Haimes
Dr Monica Konrad
Professor Neil Marlow
Professor Catherine Peckham CBE
Professor Charles Rodeck
Ms Anne Winyard
Professor Andrew Whitelaw
APOLOGIES
Professor Alastair Campbell; Professor Linda Franck (attended dinner); Dr Philippa Russell CBE (attended dinner)
SECRETARIAT
Dr Sandy Thomas; Dr Catherine Moody; Harald Schmidt; Caroline Rogers; Elaine Talaat-Abdalla; Mun-Keat Looi
INTRODUCTION
1 Professor Brazier welcomed the members of the Working Party and introduced those members who had not been able to attend the dinner the previous evening. She outlined the aims of the meeting.
GUIDELINES FOR MEMBERS OF THE WORKING PARTY
2 Professor Brazier drew attention to the Council’s Guidelines for members of the Working Party. These gave more details of the planned method of working and members’ responsibilities, including contributions to drafting in their area of expertise.
Register of Interests
3 The Council required members of Working Parties to declare any financial or other interest that may be of relevance to the topic under discussion. The Register would be posted on the Council’s website, together with a summary of the minutes of meetings and other information about the Working Party.
BACKGROUND AND CONSIDERATION OF THE MAIN AREAS OF STUDY
4 Professor Brazier invited members who had attended the initial workshop held by the Nuffield Council in 2003 to highlight some of the issues that would be important for the Working Party to consider, as a prelude to a more general discussion. The Council had decided to focus on prolonging life in fetuses and the newborn because recent advances in medicine had sharpened the ethical debate: also, by contrast with the end of life, prolonging life in the very young had consequences that lasted years beyond any initial decision. Members were asked to reflect on the fact that for the professionals, decision making in fetal medicine took into account three parties: the fetus, the parents (though the emphasis was usually on the mother) and health professionals themselves. The status of the fetus needed to be distinguished from that of the newborn because the legal and ethical frameworks governing the status of the child differed considerably dependent on whether or not the child had been born. In English law the fetus does not acquire any independent legal personality until “born alive”, whereas the newborn had the same rights as adults.
5 There followed a preliminary discussion of medical advances, the withdrawal of treatment, social factors and childhood disability.
6 It was agreed that ethical issues and the social reality should be explored in more depth at the next meeting. Discussion of the role of the law and other guidance should be left until subsequent meetings, although clarifying the legal framework would be crucial, provided sufficient flexibility was retained.
DRAFT TERMS OF REFERENCE
7 The Chair asked the members of the Working Party to consider the draft terms of reference. A revised version was agreed.
8 The first trimester (12 weeks) of pregnancy was excluded from the scope of the Report because early fetuses were not viable. Furthermore, this stage was well within the legal limits for termination on grounds of fetal abnormality or handicap and was immediately before the first tests that might be done on the developing fetus.
9 There was some discussion over terminology. On balance the Working Party preferred “newborn” to be used as an adjective, rather than as a noun. Most preferred “newborn infant” to “newborn baby” or “newborn child”. Each of the terms “fetus”, “baby”, “infant” and “child” had different connotations and were used differently in different contexts. Members agreed that this should specifically be recognised at the beginning of the Report.
MEMBERSHIP
10 The Council proposed to appoint an additional member with expertise in Health Economics to the Working Party. Suggestions were made for further consideration by the Chair and the Chair of the Council. It was agreed that no further members were needed as expert advice in other areas (eg neonatal intensive care nursing) could be obtained through visits, fact-finding meetings and the consultation.
TIMETABLE AND METHOD OF WORKING
11 The Director drew members’ attention to the timetable of meeting dates. There were three ways in which members of the Working Party would receive additional information. First, within the next half year, a consultation with the public would be held. This would be discussed in more detail later during the meeting. Secondly, members would also be able to convene fact finding meetings which provided Working Parties with the opportunity of discussing issues with nominated experts.
STRUCTURE OF THE REPORT
12 A provisional structure for the report was agreed as follows:
- Introduction
- Current clinical practice and future developments
- Current regulation and guidance
- Social issues
- Ethical issues
- Conclusions and recommendations.
13 There was agreement that the proposed chapters broadly covered the areas to be addressed by the Working Party. However, the order in which chapters appeared might be changed at a later stage. Responsibilities for drafting different sections were provisionally agreed.
PUBLIC CONSULTATION AND FACT FINDING MEETINGS
Consultation with the public in writing
14 There was discussion about the method of consultation with the public and it was queried whether the term “wider consultation” might be a more appropriate description than “public consultation”. The consultation document generally took the form of background information, followed by questions formulated around the principal issues. It would be available by post as well as on line. The likely timetable would be (approximately) from the end of February 2005 until the beginning of June. It was anticipated that the Report would have a wide audience, including not only parliamentarians and policy makers, healthcare professionals and scientists, but also parents. This made it particularly important for accessible language to be used, both in the consultation document and the report. A short version of the Report would be prepared and launched alongside the full version.
15 It was important to distinguish whether a particular response came from an individual or from the representative of a group.
Fact finding meetings
16 There was a discussion about which areas would benefit from being explored through fact finding meetings. A number of possibilities were discussed, including: visit(s) to neonatal intensive care units; visit(s) to organisations working with disabled children and their families; visit(s) to a day centre providing care for young people with continuing disabilities; visit(s) to parents; a workshop with representatives of different faith groups; a meeting or seminar on legal and ethical issues in the UK; a meeting with healthcare managers, providers and insurers, including commissioners of neonatal intensive care services; and meeting experts from other European countries. The Secretariat agreed to draft a programme of possible meetings and visits for consideration at the next meeting, beginning with visit(s) to neonatal intensive care units.
DRAFT PRESS ANNOUNCEMENT
17 The draft press announcement was discussed and revised.
The next meeting will be held on Wednesday 24 November 2004
Last Updated Wed, 16 February 2005