Clinical Ethics >
Volume 3, Number 4 >
Pp. 199-204
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Papers |
Nuffield Council on Bioethics, 28 Bedford Square, London, UK
E-mail: hwhittall{at}nuffieldbioethics.org
The Nuffield Council on Bioethics examines ethical issues raised by new developments in biology and medicine. Established by the Nuffield Foundation in 1991, the Council is an independent body, funded jointly by the Foundation, the Medical Research Council and the Wellcome Trust. Independence and quality are the underlining principles of the Council, and the way the Council works has been designed to ensure that its reports are thorough, authoritative and provide a novel, policy-oriented approach to difficult ethical dilemmas. Recent reports have considered the issues raised by public health and critical care decisions in fetal and neonatal medicine. The Council is currently considering the ethical dilemmas surrounding dementia.
 | Introduction |
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In response to concerns about the lack of a national body responsible for evaluating the ethical implications of developments in biomedicine and biotechnology, the Nuffield Foundation established the Council in 1991. There was seen to be a need for an independent body that could review developments in research, identify ethical issues, make recommendations about policy and stimulate public debate. Since 1994, the Council has been jointly funded by the Nuffield Foundation, the Medical Research Council and the Wellcome Trust on a five-year rolling system. The funding bodies neither seek to influence the Council's choice of topics, nor its policies or recommendations.
The Council has published 18 reports and discussion papers on a range of bioethical issues, including genetic screening, genetically modified crops, clinical research in developing countries, pharmacogenetics, animal research, critical care decisions in fetal and neonatal medicine, and public health.
| How the Council works |
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Although the Chair of the Council is appointed by the Nuffield Foundation in consultation with the other funders, the other members are appointed independently by the Council itself. Members are drawn from relevant fields of expertise, including science, medicine, sociology, philosophy and law. They serve on the Council for three years, with the possibility of an additional three-year term. The scope of the Council's remit is wide, so accordingly it needs to recruit members regularly from a wide range of backgrounds. Advertisements are placed periodically in the national press, but speculative expressions of interest are also welcome.
Members of the Council meet quarterly. During these meetings, the Council considers progress on ongoing projects, receives updates on recently published reports, reviews recent biomedical and biological advances that raise ethical questions, and selects topics for further exploration. In addition to quarterly meetings, the Council considers possible topics in more detail at its annual ‘Forward Look’ meeting, and holds highly focused workshops on selected topics. For an issue to progress to a complete examination by the Council, it should be novel, complex, timely and in an area in which the Council can make a distinct contribution.
Once a topic has been identified, the Council establishes a Working Party to examine and report on the issue. The Working Party is usually comprised of 10–18 experts from relevant disciplines and may include other, lay members. It meets regularly over a period of one to two years. The discussions are informed by the meetings with stakeholders, visits to relevant organizations and a public consultation. The Working Party produces their report in consultation with the Council. The Council reviews drafts of each report before it is submitted for peer review and then approves the final report prior to publication.
In preparing its reports, the Council is not bound by the values of particular schools of philosophy or approaches in bioethics, such as the ‘four principles of bioethics’. Rather, ethical frameworks are developed on a case-by-case basis by Working Parties in consultation with the Council. Explicit frameworks, norms and principles are then applied consistently to the issue in hand, to underpin the conclusions and recommendations reached in each report.
After a report is published, the Council initiates a programme of follow-up activities. Initially, media coverage, presentations at conferences and communication with a wide range of stakeholders aim to ensure effective dissemination of the report. In the next phase, the Council monitors and encourages uptake of its recommendations by the appropriate organizations.
| Position in the UK policy framework |
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The debate about whether the government should appoint a national bioethics committee recently re-emerged during the passage of the Human Fertilisation and Embryology Bill through parliament. Peers who took part in the House of Lords debate on the Bill described the Council as ‘neutral and non-political’, suggested that it produces ‘valuable, informed and authoritative reports’ and proposes ‘very forward-thinking ethical ideas that have informed subsequent legislation’.1 As this article went to press, the Council awaits the next stages of the Bill.
Though not itself a formal national committee, the Council has, through its international activities, been able to compare its work with that of national bioethics commissions in other countries. It has become clear that there are a number of advantages in being a non-government appointed body. The Council is widely perceived as being genuinely independent and its reports are consequently viewed as non-biased. Experiences in other countries indicate that closeness to government can be a real problem for the way the opinions of national ethics committees are perceived. National committees often experience difficulty in establishing a membership that reflects the various social and political stakeholder interests without diminishing their effectiveness.
In addition, the way the Council works allows it to focus on deeper analyses of issues that are relevant in the long term. National commissions are clearly useful to governments when there is a need for advice on short-term issues of narrow scope. However, the Council is able to anticipate controversy, rather than responding when debates have already become deeply entrenched.
| Promoting debate and developing policy |
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| Policy impact |
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Despite this, we know that policy-makers often do take notice of the Council's work. A review of the uptake of recommendations in nine reports published between 1993 and 2005 revealed that on average 53% of the Council's recommendations had been taken up. Of course, any analysis of the Council's effect in influencing policy is subject to limitations and the Council cannot claim that changes in policy that coincide with Council recommendations necessarily represent evidence of its influence. However, research and personal contacts often reveal that the Council has been influential. Likewise, there may be cases where there is no direct evidence of policy-makers drawing on the Council's conclusions and recommendations, although, in fact, its reports have been considered in relevant deliberations.
On the international scale, the Council is frequently invited to make presentations of its work at European and international meetings, for example by the Council of Europe, the European Commission and the International Association of Bioethics. The Council has had particular success in its work on research in developing countries. It actively collaborates with international organizations such as the World Medical Organization and the World Health Organization, and is involved with UNESCO's Ethics Task Force that assists developing countries in establishing national ethics committees or similar bodies. The World Health Organization commented recently that the Council had ‘contributed significantly to policy development in the area of international research ethics...’.2
| Recent work |
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| Public health: ethical issues |
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In February 2006, the Council set up a Working Party to consider the issues raised by public health. The group was chaired by Lord Krebs and included members with expertise in health economics, law, philosophy, public health policy, health promotion and social science. To inform discussions, the group held a public consultation and met with representatives from a range of relevant organizations, such as the Department of Health, the Health Protection Agency and the London Sport Institute. The report Public Health: Ethical Issues3 was published in November 2007, accompanied by a short guide to the report.
The report concludes that the state has an ethical duty to enable people to lead healthy lives. Starting with JS Mill, and developing the notion of the liberal state, the report proposes a ‘stewardship model’ which sets out guiding ethical principles for designing public health programmes. It also proposes an ‘intervention ladder’ that provides a way of thinking about the acceptability of different measures. Drawing on these principles in four case studies, the report goes on to consider not only the obligations of the state, but also those of third parties (such as food and drinks industries) and of individuals. The case studies focus on alcohol and tobacco, obesity, infectious disease and fluoridation of water supplies.
The ‘stewardship model’ outlines the responsibilities of the state in terms of the appropriate goals and constraints of public health measures. Acceptable public health goals include:
At the same time, public health programmes should:
The ‘intervention ladder’ is a way of thinking about the acceptability and justification of different public health policies, where the degree of intrusion of the policy might come into conflict with people's freedom to make choices. The ladder of possible government actions is shown in Box 1.
| Box 1 Intervention ladder Eliminate choice Introduce laws that entirely eliminate choice, for example compulsory isolation of people with infectious diseases Restrict choice Introduce laws that restrict the options available to people, for example removing unhealthy ingredients from foods or unhealthy foods from shops or restaurants Guide choice through disincentives Introduce financial or other disincentives to influence people's behaviour, for example increasing taxes on cigarettes or bringing in charging schemes to discourage car use in inner cities Guide choices through incentives Introduce financial or other incentives to influence people's behaviours, for example offering tax breaks on buying bicycles for travelling to work Guide choices through changing the default policy For example, changing the standard side-dish in restaurants from chips to a healthier alternative, with chips remaining an available option Enable choice Help individuals to change their behaviour, for example providing free ‘stop-smoking’ programmes, building cycle lanes or providing free fruit in schools Provide information Inform and educate the public, for example campaigns to encourage people to walk more or eat five portions of fruit and vegetables a day Do nothing or simply monitor the current situation
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Although restrictions on smoking have been a recent government priority, the Council recommends that more coercive strategies should be implemented to reduce the harm caused by excessive alcohol consumption. For example, increasing taxes on alcoholic drinks and restricting hours of sale have been shown to be effective in reducing consumption. Producers, advertisers and sellers of alcohol should also take more responsibility for preventing harm to health.
The Food Standards Agency is currently assessing the effectiveness of different types of front-of-pack labels on food packaging in influencing healthier choices. When the results are published, the Council recommends that the food industry should adopt the labelling scheme found to be the most effective. If it does not, there would be ethical justification for the UK Government to enforce it through legislation. In view of the vulnerability of children, who have limited ability to make genuine choices, schools should assume a role in helping children to develop more positive attitudes towards healthy eating and physical activity. The Council also recommends that town planners and architects should be trained to include measures that encourage people to be physically active in the design of buildings and public spaces.
After weighing the evidence and ethical considerations, the Council concluded that introducing more stringent policies for childhood vaccination (for example, penalties for those who do not comply) would not be justified at present in the UK, as current voluntary measures are sufficiently effective in providing population immunity.
Global surveillance of new and existing infectious diseases can be compromised when countries do not have the capacity for effective monitoring or where they decide not to cooperate fully with international surveillance efforts. The Council recommends that in order to help prevent future harms, the UK Government should help to improve the capacities of developing countries to monitor infectious diseases effectively.
Fluoridation of water supplies
Fluoride has been added to the water supply for over 50 years in some parts of the UK, with the aim of improving dental health. There has long been debate over whether this should continue and whether it should be rolled out in other areas of the UK. The Council found that there is still little good evidence as to the benefits and harms of fluoridation and concluded that the most appropriate way of deciding whether fluoride should be added to water supplies is through regional democratic decision-making procedures. This should, however, be supported by better and more balanced information for the public and policy-makers.
There have been many opportunities for the Council to discuss and debate the report's recommendations since it was published, as all of the case-study topics are currently high on the public agenda. The debate around alcohol consumption has received particular attention, and several meetings between the Council and policy-makers have taken place to discuss our recommendations in this area. The report has been raised in Parliament nine times in debates and questions related to public health. A busy programme of presentations is planned for the rest of 2008.
| Critical care decisions in fetal and neonatal medicine: ethical issues |
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The Council established a Working Party in October 2004 to consider the issues surrounding the treatment of extremely premature and seriously ill babies. The group, which met 10 times between September 2004 and July 2006, included neonatologists, an obstetrician, a professor of child nursing, philosophers, lawyers, a health economist and individuals who have worked with families of extremely premature babies and disabled children. Discussions were informed by a public consultation and a number of meetings, including visits to neonatal units and meetings with parents. In November 2006, the Council published the Report Critical Care Decisions in Fetal and Neonatal Medicine: Ethical Issues.4
The Council took the view that it is not always right to put a baby through the stress and pain of invasive treatment if he or she is unlikely to improve and death is inevitable. However, the outcome for babies born between 22 weeks and 26 weeks is often uncertain, which makes decisions about treatment very difficult. The Council concluded that guidance was needed to help parents and doctors make decisions, and the Council proposed for consideration the first week-by-week guidelines on when to give intensive care to extremely premature babies. The report recognized that the welfare of the baby is inextricably linked with the ability of the parents to care for and support him/her. The views of the parents should, therefore, be given considerable weight.
A summary of guidelines on giving intensive care to extremely premature babies is shown in Table 1.
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The Council concluded that the active ending of life of newborn babies should not be allowed, no matter how serious their condition is. The professional obligation of doctors is to preserve life where they can. If doctors were to be permitted actively to end the lives of seriously ill newborn babies, there is a risk that the relationship between parents and doctors would be negatively affected. It would also be very difficult to identify an upper age limit beyond which actively ending life would not be allowed.
Withdrawing treatment and palliative care
The Council endorses current UK medical practice and law that allow decisions to be made not to start or to withdraw treatment in cases where it would be futile or cause intolerable suffering for no benefit. Once a decision has been made not to give or to cease giving life-saving treatment to a newborn baby, palliative care should be given. This involves relieving pain and making the baby as comfortable as possible until he or she dies and providing support for the family. Knowledge and use of these techniques vary across the UK. The NHS should train all professionals working in neonatal medicine in palliative care.
Support for children who survive and their families
About two-thirds of surviving babies born at 23–24 weeks have moderate or severe disabilities although these children represent a very small proportion of the total number of children with disabilities. The availability of support services for disabled children and adults and their families varies across the UK. There is an inconsistency in saving the lives of the very young without providing sufficient care and support for the children who survive. The Council urges the government to accept further responsibility for ensuring that disabled children and their families receive equal access to high quality services as advocated in the National Service Framework for Children, Young People and Maternity Services.
Data collection and information
We recommend that, when making a decision about the care of their baby, parents must be provided with accessible information about the nature of any future disability. For this, it is crucial that more data are collected about the health of premature and seriously ill babies as they grow up and that this information is linked to subsequent medical and educational records.
The Abortion Act 1967 permits termination of pregnancy after 24 weeks if the fetus is at ‘substantial risk of serious handicap’. For terminations at 22 weeks or later, feticide is usually carried out to ensure that a baby is not born alive. When a woman does not want feticide, doctors may be concerned because they believe they are legally obliged to try to save a baby if he or she shows signs of life when born. However, there is no legal obligation to give treatment if after delivery the baby has no hope of survival or if the level of suffering outweighs their interest in continuing to live. In view of the potential difficulties that can arise in these circumstances, the Council recommends that a code of practice should be developed to clarify what the law does and does not require the doctors to do.
After publication, the Council discussed the recommendations with a range of key stakeholders and there have been a number of positive developments. For example, the British Association for Perinatal Medicine has established a Working Group to discuss the recommendations of the report in relation to treating premature babies at the borderline of viability and on providing information to parents. The Group includes representatives from the Royal Colleges of Paediatrics and Child Health, Obstetricians and Gynaecologists, Nurses and Midwives, the Neonatal Nurses Association and BLISS, the premature baby charity. The group is currently finalizing guidelines for the management of babies born extremely premature.
| Dementia: ethical issues |
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The Council has set up a Working Party, chaired by Tony Hope, Professor of Medical Ethics at the University of Oxford, to examine the ethical dilemmas that are faced by people with dementia and those who care for them. The group includes members with expertise in medicine, nursing, neuroscience, law, sociology and philosophy, and members representing people with dementia and carers.
To find out people's views on the issues, the Working Party will be consulting people affected with dementia, carers, health professionals, policy-makers and other members of the public. The Working Party is interested in a range of questions, including:
A report with conclusions and recommendations will be published in mid-2009.
| Conclusion |
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Biological and medical research continue to develop at quite a pace, giving rise to new questions – or novel variations on older ones – that are constantly competing for the Council's attention. At the same time, bioethics has become more prominent as an area for public discussion and debate. It is no longer a subject that can be confined to science, medicine and academia, and the Council must respond to this by ensuring that its work continues to reach a wider audience, promoting understanding and debate about some of the most profound and difficult issues of our day.
The Council currently has funding secured until 2011. If our work continues to be valued, as it seems to be, by policy-makers, academics, practitioners and patients, then we hope to be examining issues at the cutting edge of the contemporary bioethical debate for many years beyond this.
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Introduction