13 October 2008
Emeritus Professor of Medical Ethics and Humanities, University of LondonAppeared in BioNews 479
Last spring's unexpectedly vituperative and polarised debate around the revised Human Fertilisation and Embryology (HFE) Bill might conceivably have been minimised by a more transparent consultative process - including a representative national ethics committee. None of the existing ethics consultative bodies foresaw the furore that would arise around the issue of 'cybrids' or 'human admixed embryos.' Statutory subject-specific bodies such as the Human Genetics Commission or the UK BioBank Ethics and Governance Council perform a valuable function, but are limited to particular areas of medicine and science. Although there have been individual Parliamentary examples, such as the hearings of the House of Commons Committee on Science and Technology in 2004-5, essentially these were ad hoc. Furthermore, when particular issues are considered by the mixture of ad hoc committees or charitably funded institutions that currently exist, it is unclear whose views are being represented, or whether accountability to the public has been maintained.
Several MPs have now tabled amendments to the revised HFE Bill calling for a national bioethics committee, dating back to a November 2007 Lords' amendment in whose drafting I was involved, along with the obstetrician Martin Lupton. We envisaged a committee which owed a certain debt to the French model (1): a national medical ethics committee drawn from three representative constituencies, with smaller working groups selected from the full membership to deal with particular issues. The three major groupings to be represented on the committee, with a total membership of thirty to forty members, would be as follows:
The Royal Colleges of Medicine, the nursing and midwifery bodies, the British Medical Association, the Medical Research Council, Patients' Association, National Hospices and Palliative Care Association, and the General Medical Council;
Medical lawyers, representatives of the Ministry of Justice, Law Society, Law Commission, Bar Council and Department of Health;
Representatives of civic groups, religious and non-faith organisations and medical ethicists.
What would be unique in this model is that the representatives would be elected in a bottom-up manner to represent their own organisations and constituencies, rather than being appointed by the secretariat of the committee or by any governmental body. Thus the committee would be accountable both to Parliament (through the Prime Minister, who would appoint the Chair) and to the professions. The representatives would be asked to report back regularly to their sponsoring bodies (for example, through the Standards Committees of the Royal Colleges). Equal numbers of men and women would be appointed, in accordance with the model on other national ethics committees (e.g. Denmark). The committee would operate mainly by convening consultative working groups of approximately a dozen members from the full membership, but it would also be able to operate as a plenary body when required. There would be three ways in which the committee could be requested to undertake a specific consultation:
By governmental request, eg from the Prime Minister, a Parliamentary committee, an MP, a government ministry, or other public authority. Referral to the national ethics committee would be mandatory whenever new or reformed legislation on issues of bioethics, science and society was proposed in Parliament.
By the request of a civic organisation, professional body or individual citizen, if approved by the decision of a majority of committee members.
By the proposal of one or more of its own members, again if approved by a majority of the committee.
This flexibility of procedure would reinforce the representative, 'bottom-up' model. Although the committee would be statutory, consultative and independent in status, it would carry authority due to the appointment of its president by the Prime Minister, together with the mandate of reporting back to governmental requests and the requirement of being consulted when new legislation was proposed. It would have the powers to call expert witnesses and to receive reports from relevant biomedical bodies such as the Human Fertilisation and Embryology Authority or the Human Tissue Authority.
Opinions of the committee would not necessarily have to be unanimous; if dissent was unbridgeable, a minority opinion should be published in the final report, along with the majority opinion. Other national ethics committees have found that over the years different presidents have laid different levels of stress on attaining unanimity and on presenting a definite opinion to the government. The French committee has often succeeded in attaining unanimity through concentrating on practical regulation, rather than foundational debate on controversial concepts such as the status of the embryo. The UK committee's representative basis, explicitly including the views of the clinical professions, would also facilitate such a pragmatic emphasis.
Some Parliamentary variants on the national ethics committee are more palatable than others. We would agree with Mary Warnock's view (2) that there is no need for another unelected body, as proposed in one Parliamentary amendment which stipulated eight commissioners to be appointed by the Secretary of State. Of course the Warnock committee did valuable work without being elected - but what we propose is something much more democratic. We need to establish a committee which is permanent in its structure, transparent in its operations, representative of our multicultural society and rooted firmly in the practical dilemmas that actually face the medical profession.