Trilateral meeting of Nuffield Council on Bioethics, UK Comite Consultatif National d Ethique, France Nationaler Ethikrat, Germany 4 June 2007, London NOTE OF MEETING Present: Nuffield Council on Bioethics Professor Sir Bob Hepple QC Professor Roger Brownsword Dr Rhona Knight Professor Peter Smith Hugh Whittall Dr Carole McCartney Harald Schmidt Katharine Wright Catherine Joynson Comite Consultatif National d Ethique Professor Jean-Claude Ameisen Professor Sadek Béloucif Chantal Lebatard Philippe Rouvillois Marie-Hélène Mouneyrat Nationaler Ethikrat Kristiane Weber-Hassemer Professor Eckhard Nagel Dr Jürgen Schmude Professor Spiros Simitis Professor Jochen Taupitz Professor Wolfgang van den Daele Dr Christiane Woopen Dr Rudolf Teuwsen The role of bioethics advisory bodies 1 Bioethics advisory bodies had been established under different models in different countries. This was likely to have been due to: - the impact and timing of scientific development; - the cultural and political environment; - the existing regulatory framework. 1
2 The UK s Nuffield Council on Bioethics was an independent body, originally established by the Nuffield Foundation, which did not have any official links to government. The impact of the Council depended on its reputation and the quality of its work. The German Nationaler Ethikrat (NER) was a national forum whose members were appointed by the Chancellor. It determined its own work programme but also produced Opinions at the request of the government and parliament. The structure of the NER was soon likely to be revised and set out in a new law, with half the members appointed by parliament and half by government. The French Comite Consultatif National d Ethique (CCNE) was an independent body, established by a decree signed by the President, which was later enacted in law. Members were appointed by the President. The CCNE determined its own work programme but topics could be suggested by government, parliament, other bodies or the general public. 3 A number of points were made during discussion including: Bioethics discussions can arise out of concern about new developments that seem to contravene human rights. Using reason or emotion in such discussions may be out of date. It may be more helpful to use the concept of freedom, and ask I want you to be free rather than I want to be free. Advisory bodies were often criticised for not reaching a consensus, but bioethics was a process of deliberation, not a quest for the truth. 4 The contribution of ethics advisory bodies might be: - to establish that disagreement about moral values and beliefs exists in society; - to assist in resolving conflicts over moral issues; - to help parliament make policy decisions. 5 Advisory bodies should keep in mind that, because members of parliament were not usually elected for their moral views, the majority of opinion in parliaments did not tend to fit public opinion. In addition, it was important to distinguish between an opinion, based on gut reaction, and a moral view, which was backed up by thought-through moral argument. Bioethics advisory bodies had an important role in raising public awareness and giving people the tools to debate and discuss issues in bioethics. Ethical issues in biometrics 6 The Nuffield Council had established a Working Group in 2006 to identify and consider the ethical, social and legal issues raised by current and potential future uses of bioinformation for forensic purposes. The Group was focussing on the use of DNA and fingerprints in criminal investigation. The UK had the largest DNA database in the world, with 2
police able to take DNA from anyone suspected of a crime and store it on the database indefinitely. DNA generally had a very positive public image and was a powerful tool in court. The Group was considering a number of issues concerning personal liberty and privacy, including the use of the database for familial searching and inferring ethnicity from DNA. 7 The CCNE had very recently published an Opinion on Biometrics: identifying data and human rights. The Opinion focused on protecting the privacy of people who had biometric data stored on databases. It recommended that the purpose of data collection should be explicit and tightly controlled, and that genetic identity databases should be placed under the authority of an independent judge. It was hoped that the Opinion would stimulate public debate. 8 Further points raised included: - Further research on the usefulness of DNA in solving crime was needed. The public often overestimated the extent to which DNA evidence was used in criminal investigations. - Protecting liberty by limiting the use of biometric data may have some costs, for example, a crime might occur that could have been prevented. This was not popular with the general public. - The bias towards young, black males on DNA databases was likely to be a consequence of policing tactics. - It was generally thought that a population-wide database was disproportionate to the need to fight crime. Rationing of healthcare resources 9 Health was a special good and a fundamental condition for equal opportunities and justice. A society which did not provide its members with a sufficient amount of this basic good could not be characterised as just. For many years, many countries had adopted the concept that every citizen should have equal access to population-wide healthcare resources. 10 Medical progress had meant that more effective treatments were available, which allowed people to live longer. This increased the number of people with multiple morbid conditions and, therefore, the cost of providing healthcare to society. Healthcare systems were often being reformed to cope with increasing health demands. 11 Decisions about rationing healthcare resources took place at various levels: political; primary care trust; hospital; healthcare professional and individual. How to balance efficiency and justice was a central dilemma in rationing decisions, and there were a number of criteria that could be considered in determining the allocation of resources: - need (clinical or social); - capacity to benefit; 3
- effectiveness and futility; - the level of healthiness to be obtained: comprehensive or minimal; - prevention over treatment (over palliative care); - personal responsibility and lifestyle; - compliance; - fair innings; - saving the most lives. 12 The British Medical Association (BMA) had recently published a report entitled A rational way forward for the NHS in England. In it the BMA accepted that many health treatments would have to be rationed in future because the National Health Service (NHS) could not cope with increasing demand from patients. They suggested that there was currently a lack of strategic oversight and consistency across the NHS. The BMA recommended that a package of nationally available NHS healthcare services should be agreed and delivered. 13 Those involved in the debate on this topic in Germany had begun referring to rationalisation without considering whether there were enough resources in the system. A number of solutions to the lack of funds were being considered, including increasing personal contributions, enlarging the basis of contribution (e.g. rental income, returns on interest), and increasing the social security contribution ceiling. 14 At 9.5 percent, France allocated the largest proportion of GDP to healthcare out of the OECD countries. This proportion could not increase indefinitely and there was a need to address inequalities in access to healthcare. Currently, the national authorities in France had not reflected on overall priorities in healthcare, instead focussing on specific areas, such as cancer treatment. The CCNE were currently developing an Opinion on the ethical issues raised by the use of very expensive treatment. 15 The UK, France and Germany had each identified a need for a debate on the rationing of healthcare resources. It would be important to determine how rationing decisions were currently being made, and to consider the international dimension in obtaining treatments. The terminology used in this debate could affect public perception. Rationing conjured images of war time shortages, whereas priority setting sounded more positive. Resource allocation was probably the most descriptive term. Conclusion 16 The participants agreed that the trilateral format had been successful. The small number of participants (around 20) and the lack of translation services had facilitated good discussion and given the meeting an informal feel. The format and timing of the next meeting would depend on the future status of the NER which was soon to be reviewed. 4
17 The CCNE invited the Nuffield Council and NER to the next International Meeting of National Bioethics Advisory Bodies (formerly the Global Summit of National Bioethics Commissions), which it would be hosting in September 2008. 5