Nuffield Council on Bioethics

Nuffield Council on Bioethics
Founded	1991
Focus	Exploring ethical issues in biology and medicine
Location	London, United Kingdom
Website	Nuffield Council on Bioethics website

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, the Medical Research Council and the Wellcome Trust.^[1]

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 and biotechnology.^[2] Its terms of reference^[3] are:

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;
To make arrangements for examining and reporting on such questions with a view to promoting public understanding and discussion;
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”^[4] ,^[5] and “the ethics watchdog for the science industry”.^[6]

In addition to producing in depth policy reports, the Council produces bioethics resources for teachers ^[7] and runs a blog.^[8]

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 organises a workshop to examine the issue further. If appropriate, a Working Party is then established to report on the issue. Members of the Working Party are appointed by the Council and chosen to represent a range of specialist experience and skills.^[9] 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 and then approves the final report prior to publication.

Membership and 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.^[10] When vacancies arise, the Council advertises for new members in the national press, through its widely-distributed newsletter and on its website. The Council's Membership Subgroup considers and makes recommendations to the Council on future members selected from the respondents to the advertisements.^[11]

Chair

Since March 2012 the Council has been chaired by Jonathan Montgomery,^[12] currently Professor of Health Care Law at University College London and Chair of the Health Research Authority.^[13]

Former Chairs:

Professor Albert Weale FBA
Professor Sir Bob Hepple QC FBA
Professor Sir Ian Kennedy FBA
Baroness Onora O'Neill CBE, FBA
Sir Patrick Nairne GCB, MC

Director

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

Former Directors:

Professor Sandy Thomas
David Shapiro

Publications

Novel neurotechnologies: intervening in the brain (June 2013)^[14]
Donor conception: ethical aspects of information sharing (April 2013)^[15]
Emerging biotechnologies: technology, choice and the public good (2012)^[16]
Novel techniques for the prevention of mitochondrial DNA disorders: an ethical review (2012)^[17]
Human bodies: donation for medicine and research (2011) ^[18]
Biofuels: ethical issues (2011) ^[19]
Medical profiling and online medicine: the ethics of 'personalised healthcare' in a consumer age (2010) ^[20]
Dementia: ethical issues (2009)^[21]
Public health: ethical issues (2007)^[22]
The forensic use of bioinformation: ethical issues (2007)^[23]
Critical care decisions in fetal and neonatal medicine: ethical issues (2006)^[24]
Genetic Screening: a Supplement to the 1993 Report by the Nuffield Council on Bioethics (2006)^[25]
The ethics of research involving animals (2005)^[26]
The ethics of research related to healthcare in developing countries: a follow-up Discussion Paper (2005)^[27]
The use of genetically modified crops in developing countries: a follow-up Discussion Paper (2003)^[28]
Pharmacogenetics: ethical issues (2003)^[29]
Genetics and human behaviour: the ethical context (2002)^[30]
The ethics of patenting DNA: a discussion paper (2002)^[31]
The ethics of research related to healthcare in developing countries (2002)^[32]
Stem cell therapy: the ethical issues – a discussion paper (2000)^[33]
The ethics of clinical research in developing countries: a discussion paper (1999)^[34]
Genetically modified crops: the ethical and social issues (1999)^[35]
Mental disorders and genetics: the ethical context (1998)^[36]
Animal-to-human transplants: the ethics of Xenotransplantation (1996)^[37]
Human tissue: ethical and legal issues (1995)^[38]
Genetic screening: ethical issues (1993)^[39]

Forthcoming publications

The collection, linking, use and exploitation of biological and health data: ethical issues (2014)^[40]
Children and clinical research: ethical issues (2015)^[41]

Influence

The Council’s recommendations to policy makers have often been described as ‘influential’.^[42]^[43]^[44]^[45]^[46]

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 ^[47]	White Paper: Healthy lives, healthy people: our strategy for public health in England ^[48]
Department of Health (2010)	Dementia: ethical issues ^[49]	‘Nothing Ventured, Nothing Gained’: Risk Guidance for people with dementia ^[50]
Killoran, A. & White, P. (2010)	Public Health: ethical issues ^[51]	NICE Public Health Guidance ^[52]
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 ^[53]
Wilkinson, A.R et al. (2009)	Critical care decisions in fetal and neonatal medicine: ethical issues^[54]	Guidance on the management of babies born at less than 26 weeks' gestation^[55]
European Court of Human Rights (2008)	The forensic use of bioinformation: ethical issues^[56]	Case of S. and Marper v. the United Kingdom^[57]
Lord Avebury (2007)	Public health: ethical issues^[58]	House of Lords debate on alcohol recommendations^[59]
Howard Stoate MP (2007)	Public health: ethical issues^[60]	House of Commons debate on the Health and Social Care Bill^[61]
Teresa May MP (2007)	Public health: ethical issues^[62]	House of Commons debate on 24 hr drinking^[63]
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^[64]	Ethical challenges in study design and informed consent for health research in resource-poor settings^[65]

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 2012-2016 following the completion of a strategic review.^[66]

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 (for example, utilitarianism, deontology, virtue ethics) or approaches in bioethics, such as the ‘four principles of bioethics’ (autonomy, justice, beneficence, non-maleficence), or the Barcelona Principles (autonomy, dignity, integrity, vulnerability).^[67]

In 2006-7, John Harris, Professor of Bioethics at the University of Manchester, 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.^[68] The authors found that the ethical frameworks used in the Council’s publications had become increasingly explicit and transparent.