NCoB@25

The Nuffield Council on Bioethics is now 25 years old and our anniversary meeting at the Institute for Contemporary Arts on 14 November provided us with an opportunity to take stock of the current state of public bioethics and our place in it. Thankfully, the speakers and attendees demonstrated that bioethics remains an important, interesting and lively field and also that the NCoB has a distinctive place within it.

The genesis of the Council sheds interesting light on its current purposes and shows how prescient the Nuffield Foundation was in facilitating its birth. Calls in the late 1980s for a national ethics committee were made by leading figures, including Ian Kennedy and Mary Warnock, but Duncan Wilson’s excellent study of the Making of British Bioethics (2014) records that the Government of the day saw no need for such a body.

The Nuffield Foundation thought the issue deserved closer examination. It convened a conference that found a case for the creation of a national ethics committee based on the need to:

• have a coherent oversight of issues (to complement ad hoc arrangements such as the Warnock Committee that looked only at discrete areas)
• enhance capacity to anticipate issues, or at least respond rapidly
• encourage the development of bioethical studies in universities
• provide a UK voice in the European institutions (something that was ‘becoming more pressing’ as the European Parliament took increasing account of recommendations coming from the Council of Europe’s specialist committee)
• stimulate greater co-ordination in government and between non-government bodies on matters of bioethics, and
• raise the profile of bioethics on the public agenda, promoting understanding and confidence

A wider consultation followed that elicited supportive responses from almost all the respondents, although the Medical Research Council, at that time, expressed some skepticism based on ‘foreign experience' about the usefulness of formal national bodies. The Nuffield Foundation decided to fund the Council for an initial three-year period and it was set up in May 1991. By the end of that period the MRC had overcome its reservations and, along with the Wellcome Trust, now co-funds the Council with the Nuffield Foundation.

The issues identified at that initial meeting remain pertinent. Timeliness and responsiveness present particular challenges to which we have adapted in a number of ways. In accordance with our strategic plan, over the past five years, the Council has extended its activities and found new ways to address the need for quicker interventions. In addition to the long and detailed reports, on which the Council’s reputation for the high quality of its work has been built, we have issued sixteen background papers, eleven briefing papers, and submitted more than forty responses to Parliamentary and other inquiries and consultations. Capacity building in bioethics is not directly within the Council’s gift, but we support those working in the field through our newsletter (now issued monthly), blog posts and twitter feed. In contrast to the position in 1991, the boundaries between lay and professional communities have faded and all these activities attract media and public interest. There is little doubt that bioethical issues are firmly on the public agenda.

Coherent oversight remains elusive in the UK. ‘Official’ bioethical reflection continues to be built on a ‘distributed’ (the positive spin on ad hoc) model. Bodies dealing with specific sectors or issues have proliferated. Statutory regulators have been established for human fertilisation, tissue, and research. Governments have commissioned advice through a wide range of channels, e.g. a task force on matters of consent in organ donation, a committee on the ethics of pandemic influenza, an expert group advising the Chief Medical Officer on ethical issues relating to the 100,000 genomes project. Parliamentary Select Committees have addressed key ethical questions, including some to which the Nuffield Council has given oral evidence: mitochondrial donation, big data, genetically modified insects. Learned societies have made also important contributions, examples include the Academy of Medical Sciences reports on Inter-Species Embryos and in collaboration with the Royal Society on The Use of Non-human Primates in Research.

There is still no body with the formal authority to co-ordinate this diverse range of activities in public bioethics, but the importance of a coherent UK voice in the international community has grown rather than reduced in the Council’s lifetime. The Council of Europe has the only legally binding international instrument in the Oviedo Convention. Although not a signatory to that Convention, the UK is active in the Council of Europe’s work and (at the invitation of the Government) staff from the Nuffield Council have been around the table to ensure the country’s expertise in bioethics is fed into the deliberations. The EU National Ethics Committee Forum has grown in significance and Nuffield has provided a strong UK voice, presenting at most of its meetings and heavily involved in the steering groups that plan meetings. The same pattern can be seen in the biennial Global Summit of National Ethics Committees, where the UK (represented by the Nuffield Council on Bioethics) is regarded as a world leader in the field despite the informality of its distributed approach to public bioethics. The challenge of co-ordination thus now goes beyond national boundaries, and Professor Peter Dabrock, chair of the German Ethics Council reminded the anniversary meeting of the recent statement of joint intent between the NCoB, the German and the French Councils to work closely with each other as they each explored the implications of genome editing.

Back at the Nuffield Foundation’s 1990 conference, the issue of authority had been identified, and it was thought that in the absence of any formal powers, the authority of the new body would rest on four factors:

• the standing and quality of its members and chair
• the value and public impact of its work
• its independent character
• and its ability to capitalise on the wide acceptance of the need for such a body to achieve influence

Speakers at our anniversary meeting provocatively reminded us of the risks that bioethicists could sometimes be ‘pompous and pointless’ and that national bioethics advisory bodies might be ‘worthy but irrelevant’, although we were comforted by the reassurance that the NCoB had avoided falling into these traps.

In a recent presentation to the US Presidential Commission for the Study of Bioethical issues, I suggested that the lack of positional authority for the Nuffield Council meant that it had to earn respect through its ‘virtues’ – its character and ways of working. I suggested that three such virtues were crucial. First, independence in the sense that the Council was not beholden to, or under the influence of, others in the conclusions that it reaches or the topics that it selects for examination. Second, courage to speak our mind even when it would make us unpopular. Third, practical engagement with policy makers through conversation rather than commentary from the side-lines.

Professor Chris Whitty, Chief Scientific Adviser at the Department of Health, suggested to our meeting that the informal status of the Nuffield Council on Bioethics was in fact essential to the independence that it has maintained, on which its reputation and impact depended. He argued that the Council’s powerlessness was the key to its influence, as it protected it from being lobbied by vested interests, and the lack of formal authority made it possible to trust the Council’s contributions. He, and others at the meeting, looked forward to another 25 years of activity.