Nuffield Council on Bioethics
Encyclopedia
The Nuffield Council on Bioethics is a UK-based independent charitable body, which examines and reports on ethical issues raised by new advances in biological and medical research. Established in 1991, the Council is funded by the Nuffield Foundation
Nuffield Foundation
The Nuffield Foundation is a British charitable trust, established in 1943 by William Morris , the founder of the Morris Motor Company. Lord Nuffield wanted to contribute to improvements in society, including the expansion of education and the alleviation of disadvantage...

, the Medical Research Council
Medical Research Council (UK)
The Medical Research Council is a publicly-funded agency responsible for co-ordinating and funding medical research in the United Kingdom. It is one of seven Research Councils in the UK and is answerable to, although politically independent from, the Department for Business, Innovation and Skills...

 and the Wellcome Trust
Wellcome Trust
The Wellcome Trust was established in 1936 as an independent charity funding research to improve human and animal health. With an endowment of around £13.9 billion, it is the United Kingdom's largest non-governmental source of funds for biomedical research...

.

Purpose

The Council was set up in response to concerns about the lack of a national body responsible for evaluating the ethical implications of developments in biomedicine
Biomedicine
Biomedicine is a branch of medical science that applies biological and other natural-science principles to clinical practice,. Biomedicine, i.e. medical research, involves the study of physiological processes with methods from biology, chemistry and physics. Approaches range from understanding...

 and biotechnology
Biotechnology
Biotechnology is a field of applied biology that involves the use of living organisms and bioprocesses in engineering, technology, medicine and other fields requiring bioproducts. Biotechnology also utilizes these products for manufacturing purpose...

. Its terms of reference are:
  1. To identify and define ethical questions raised by recent advances in biological and medical research in order to respond to, and to anticipate, public concern;
  2. To make arrangements for examining and reporting on such questions with a view to promoting public understanding and discussion;
  3. In the light of the outcome of its work, to publish reports; and to make representations, as the Council may judge appropriate.


The Council has been variously labelled a “think-tank”
, and “the ethics watchdog for the science industry”.

How the Council Works

The Council chooses its own topics on which to report. Members of the Council meet four to six times a year to consider progress on ongoing projects, receive updates on published reports, review recent biomedical advances that raise ethical questions, and select topics for further exploration.

Once the Council has identified a major ethical issue, it establishes an expert working party, consisting of an independent Chair and 7-14 members. Members of the working party are appointed by the Council and chosen to represent a range of specialist experience and skills. Typically, a working party meets regularly over a period of one to two years to produce a report. A public consultation is held to gain the views of a wide range of people to inform the findings of the report. The Council reviews drafts of the report before it is submitted for external peer review
Peer review
Peer review is a process of self-regulation by a profession or a process of evaluation involving qualified individuals within the relevant field. Peer review methods are employed to maintain standards, improve performance and provide credibility...

 and then approves the final report prior to publication.

Membership & Governance

The Chair of Council is appointed by the Nuffield Foundation in consultation with the other funders. Chairs are appointed for five years. The other members are drawn from relevant fields of expertise including science, medicine, sociology, philosophy and law, for an initial period of three years, with the possibility of an additional three-year term. When vacancies arise, the Council publishes requests for expressions of interest in the press, relevant newsletters and on its website. Applications are then reviewed by the Council's Membership Committee, which is chaired by an independent external expert, currently Sir Graham Hart KCB, Former Permanent Secretary at the Department of Health.

Chair

The Council is currently chaired by Albert Weale FBA, ESRC Professorial Fellow & Professor of Political Theory and Public Policy at University College London
University College London
University College London is a public research university located in London, United Kingdom and the oldest and largest constituent college of the federal University of London...

.

Former Chairs:
  • Professor Sir Bob Hepple
    Bob Hepple
    Sir Bob Hepple QC is a South African born academic and leader in the fields of labour law, tort and discrimination. He taught for much of his career at Cambridge University, University College London and as Chairman of the Industrial Tribunals....

     QC FBA
  • Professor Sir Ian Kennedy
    Ian Kennedy (lawyer)
    Sir Ian McColl Kennedy LLM LLD is a British academic lawyer who has specialised in the law and ethics of health. He was appointed to chair the Independent Parliamentary Standards Authority in 2009...

     FBA
  • Baroness Onora O'Neill CBE, FBA
  • Sir Patrick Nairne
    Patrick Nairne
    The Rt Hon Sir Patrick Nairne, GCB, MC was a senior British civil servant. He was formerly Permanent Secretary of the Department of Health and Social Security and Master of St Catherine's College, Oxford ....

     GCB, MC

Director

Hugh Whittall has been the Director of the Council since February 2007.

Former Directors:
  • Professor Sandy Thomas
  • David Shapiro

Publications

  • Human bodies: donation for medicine and research (2011)
  • Biofuels: ethical issues (2011)
  • Medical profiling and online medicine: the ethics of 'personalised healthcare' in a consumer age (2010)
  • Dementia: ethical issues (2009)
  • Public health: ethical issues (2007)
  • The forensic use of bioinformation: ethical issues (2007)
  • Critical care decisions in fetal and neonatal medicine: ethical issues (2006)
  • Genetic Screening: a Supplement to the 1993 Report by the Nuffield Council on Bioethics (2006)
  • The ethics of research involving animals (2005)
  • The ethics of research related to healthcare in developing countries: a follow-up Discussion Paper (2005)
  • The use of genetically modified crops in developing countries: a follow-up Discussion Paper (2003)
  • Pharmacogenetics: ethical issues (2003)
  • Genetics and human behaviour: the ethical context (2002)
  • The ethics of patenting DNA: a discussion paper (2002)
  • The ethics of research related to healthcare in developing countries (2002)
  • Stem cell therapy: the ethical issues – a discussion paper (2000)
  • The ethics of clinical research in developing countries: a discussion paper (1999)
  • Genetically modified crops: the ethical and social issues (1999)
  • Mental disorders and genetics: the ethical context (1998)
  • Animal-to-human transplants: the ethics of Xenotransplantation (1996)
  • Human tissue: ethical and legal issues (1995)
  • Genetic screening: ethical issues (1993)

Influence

The Council’s recommendations to policy makers have often been described as ‘influential’.

The Council has been cited or referred to in the following publications and parliamentary speeches:
Cited by Report referred to Nature of publication or speech
Department of Health (2010) Public Health: ethical issues White Paper: Healthy lives, healthy people: our strategy for public health in England
Department of Health (2010) Dementia: ethical issues ‘Nothing Ventured, Nothing Gained’: Risk Guidance for people with dementia
Killoran, A. & White, P. (2010) Public Health: ethical issues NICE Public Health Guidance
House of Lords Science and Technology Committee (2009) Medical Profiling and online medicine: The ethics of 'personalised' health care in a consumer age Science and Technology Committee Report on Genomic Medicine
Wilkinson, A.R et al. (2009) Critical care decisions in fetal and neonatal medicine: ethical issues Guidance on the management of babies born at less than 26 weeks' gestation
European Court of Human Rights (2008) The forensic use of bioinformation: ethical issues Case of S. and Marper v. the United Kingdom
Lord Avebury (2007) Public health: ethical issues House of Lords debate on alcohol recommendations
Howard Stoate MP (2007) Public health: ethical issues House of Commons debate on the Health and Social Care Bill
Teresa May MP (2007) Public health: ethical issues House of Commons debate on 24 hr drinking
World Health Organisation on behalf of the Special Programme for Research and Training in Tropical Diseases (2007) The ethics of research related to healthcare in developing countries Ethical challenges in study design and informed consent for health research in resource-poor settings

Funding

The Council was entirely funded by the Nuffield Foundation from 1991-1994. 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. Towards the end of each five-year period, a process of external review is a condition of continued support. Funding for the Council has been confirmed for the period 2007-2012.

Ethical approach

The Council takes the view that its terms of reference do not require it to adopt the same ethical framework or set of principles in all reports. The Council is therefore not bound by the values of particular schools of philosophy
Philosophy
Philosophy is the study of general and fundamental problems, such as those connected with existence, knowledge, values, reason, mind, and language. Philosophy is distinguished from other ways of addressing such problems by its critical, generally systematic approach and its reliance on rational...

 (for example, utilitarianism
Utilitarianism
Utilitarianism is an ethical theory holding that the proper course of action is the one that maximizes the overall "happiness", by whatever means necessary. It is thus a form of consequentialism, meaning that the moral worth of an action is determined only by its resulting outcome, and that one can...

, deontology, virtue ethics
Virtue ethics
Virtue ethics describes the character of a moral agent as a driving force for ethical behavior, rather than rules , consequentialism , or social context .The difference between these four approaches to morality tends to lie more in the way moral dilemmas are...

) or approaches in bioethics, such as the ‘four principles of bioethics’ (autonomy
Autonomy
Autonomy is a concept found in moral, political and bioethical philosophy. Within these contexts, it is the capacity of a rational individual to make an informed, un-coerced decision...

, justice
Justice
Justice is a concept of moral rightness based on ethics, rationality, law, natural law, religion, or equity, along with the punishment of the breach of said ethics; justice is the act of being just and/or fair.-Concept of justice:...

, beneficence, non-maleficence), or the Barcelona Principles (autonomy, dignity
Dignity
Dignity is a term used in moral, ethical, and political discussions to signify that a being has an innate right to respect and ethical treatment. It is an extension of the Enlightenment-era concepts of inherent, inalienable rights...

, integrity
Integrity
Integrity is a concept of consistency of actions, values, methods, measures, principles, expectations, and outcomes. In ethics, integrity is regarded as the honesty and truthfulness or accuracy of one's actions...

, vulnerability
Vulnerability
Vulnerability refer to the susceptibility of a person, group, society, sex or system to physical or emotional injury or attack. The term can also refer to a person who lets their guard down, leaving themselves open to censure or criticism...

).

In 2006-7 John Harris
John Harris (bioethicist)
John Harris, FRSA, FMedSci , is a British bioethicist and philosopher. He is the Lord Alliance Professor of Bioethics and Director of the Institute for Science, Ethics and Innovation at the University of Manchester. He was educated at the University of Kent and Balliol College, Oxford...

, Professor of Bioethics at the University of Manchester
University of Manchester
The University of Manchester is a public research university located in Manchester, United Kingdom. It is a "red brick" university and a member of the Russell Group of research-intensive British universities and the N8 Group...

, and Dr Sarah Chan carried out an external review of the way ethical frameworks, principles, norms and guiding concepts feature in the Council’s publications. The authors found that the ethical frameworks used in the Council’s publications had become increasingly explicit and transparent.

External links

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