Nuffield Council on Bioethics

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

Contents

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:

  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”[4] [5], and “the ethics watchdog for the science industry”.[6]

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.[7] 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 & 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.[8] 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.

Former Chairs:

  • 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

  • Human bodies: donation for medicine and research (2011) [9]
  • Biofuels: ethical issues (2011) [10]
  • Medical profiling and online medicine: the ethics of 'personalised healthcare' in a consumer age (2010) [11]
  • Dementia: ethical issues (2009)[12]
  • Public health: ethical issues (2007)[13]
  • The forensic use of bioinformation: ethical issues (2007)[14]
  • Critical care decisions in fetal and neonatal medicine: ethical issues (2006)[15]
  • Genetic Screening: a Supplement to the 1993 Report by the Nuffield Council on Bioethics (2006)[16]
  • The ethics of research involving animals (2005)[17]
  • The ethics of research related to healthcare in developing countries: a follow-up Discussion Paper (2005)[18]
  • The use of genetically modified crops in developing countries: a follow-up Discussion Paper (2003)[19]
  • Pharmacogenetics: ethical issues (2003)[20]
  • Genetics and human behaviour: the ethical context (2002)[21]
  • The ethics of patenting DNA: a discussion paper (2002)[22]
  • The ethics of research related to healthcare in developing countries (2002)[23]
  • Stem cell therapy: the ethical issues – a discussion paper (2000)[24]
  • The ethics of clinical research in developing countries: a discussion paper (1999)[25]
  • Genetically modified crops: the ethical and social issues (1999)[26]
  • Mental disorders and genetics: the ethical context (1998)[27]
  • Animal-to-human transplants: the ethics of Xenotransplantation (1996)[28]
  • Human tissue: ethical and legal issues (1995)[29]
  • Genetic screening: ethical issues (1993)[30]

Forthcoming Publications

  • Emerging biotechnologies (2012)[31]

Influence

The Council’s recommendations to policy makers have often been described as ‘influential’[32][33][34][35].

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 [36] White Paper: Healthy lives, healthy people: our strategy for public health in England [37]
Department of Health (2010) Dementia: ethical issues [38] ‘Nothing Ventured, Nothing Gained’: Risk Guidance for people with dementia [39]
Killoran, A. & White, P. (2010) Public Health: ethical issues [40] NICE Public Health Guidance [41]
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 [42]
Wilkinson, A.R et al. (2009) Critical care decisions in fetal and neonatal medicine: ethical issues[43] Guidance on the management of babies born at less than 26 weeks' gestation[44]
European Court of Human Rights (2008) The forensic use of bioinformation: ethical issues[45] Case of S. and Marper v. the United Kingdom[46]
Lord Avebury (2007) Public health: ethical issues[47] House of Lords debate on alcohol recommendations[48]
Howard Stoate MP (2007) Public health: ethical issues[49] House of Commons debate on the Health and Social Care Bill[50]
Teresa May MP (2007) Public health: ethical issues[51] House of Commons debate on 24 hr drinking[52]
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[53] Ethical challenges in study design and informed consent for health research in resource-poor settings[54]

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.[55]

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).[56]

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.[57] The authors found that the ethical frameworks used in the Council’s publications had become increasingly explicit and transparent.

References

  1. ^ The Nuffield Foundation: About Us
  2. ^ Whittall, H. (2008) A closer look at the Nuffield Council on Bioethics Clin Ethics 3:199-204 (p.199)
  3. ^ Nuffield Council on Bioethics: About Us
  4. ^ PHG Foundation: Nuffield Council on Bioethics considers gene patenting
  5. ^ The Guardian: Think tank calls for more control on DNA sequences
  6. ^ The Daily Mail: DNA database turns 'innocents into criminals'
  7. ^ Nuffield Council on Bioethics: What is a Working Party
  8. ^ Whittall, H. (2008) A closer look at the Nuffield Council on Bioethics Clin Ethics 3:199-204 (p.199)
  9. ^ Nuffield Council on Bioethics (2011) Human bodies: donation for medicine and research"(London: Nuffield Council on Bioethics)
  10. ^ Nuffield Council on Bioethics (2011) Biofuels: ethical issues (London: Nuffield Council on Bioethics)
  11. ^ Nuffield Council on Bioethics (2010) Medical profiling and online medicine: the ethics of personalised healthcare in a consumer age (London: Nuffield Council on Bioethics)
  12. ^ Nuffield Council on Bioethics (2009) Dementia: ethical issues (London: Nuffield Council on Bioethics)
  13. ^ Nuffield Council on Bioethics (2007) Public health: ethical issues (London: Nuffield Council on Bioethics)
  14. ^ Nuffield Council on Bioethics (2007) The forensic use of bioinformation: ethical issues (London: Nuffield Council on Bioethics)
  15. ^ Nuffield Council on Bioethics (2006) Critical care decisions in fetal and neonatal medicine: ethical issues (London: Nuffield Council on Bioethics)
  16. ^ Nuffield Council on Bioethics (2006) Genetic Screening: a Supplement to the 1993 Report by the Nuffield Council on Bioethics (London: Nuffield Council on Bioethics)
  17. ^ Nuffield Council on Bioethics (2005) The ethics of research involving animals (London: Nuffield Council on Bioethics)
  18. ^ Nuffield Council on Bioethics (2005) The ethics of research related to healthcare in developing countries: a follow-up Discussion Paper (London: Nuffield Council on Bioethics)
  19. ^ Nuffield Council on Bioethics (2003) The use of genetically modified crops in developing countries: a follow-up Discussion Paper (London: Nuffield Council on Bioethics)
  20. ^ Nuffield Council on Bioethics (2003) Pharmacogenetics: ethical issues (London: Nuffield Council on Bioethics)
  21. ^ Nuffield Council on Bioethics (2002) Genetics and human behaviour: the ethical context (London: Nuffield Council on Bioethics)
  22. ^ Nuffield Council on Bioethics (2002) The ethics of patenting DNA: a discussion paper (London: Nuffield Council on Bioethics)
  23. ^ Nuffield Council on Bioethics (2002) The ethics of research related to healthcare in developing countries (London: Nuffield Council on Bioethics)
  24. ^ Nuffield Council on Bioethics (2000) Stem cell therapy: the ethical issues (London: Nuffield Council on Bioethics)
  25. ^ Nuffield Council on Bioethics (1999) The ethics of clinical research in developing countries: a discussion paper (London: Nuffield Council on Bioethics)
  26. ^ Nuffield Council on Bioethics (1999) Genetically modified crops: the ethical and social issues (London: Nuffield Council on Bioethics)
  27. ^ Nuffield Council on Bioethics (1998) Mental disorders and genetics: the ethical context (London: Nuffield Council on Bioethics)
  28. ^ Nuffield Council on Bioethics (1996) Animal-to-human transplants: the ethics of Xenotransplantation (London: Nuffield Council on Bioethics)
  29. ^ Nuffield Council on Bioethics (1995) Human tissue: ethical and legal issues (London: Nuffield Council on Bioethics)
  30. ^ Nuffield Council on Bioethics (1993) Genetic screening: ethical issues (London: Nuffield Council on Bioethics)
  31. ^ http://www.nuffieldbioethics.org/emerging-biotechnologies
  32. ^ In the news.co.uk: Alcohol taxation
  33. ^ BBC News: GM crops 'good for developing countries'
  34. ^ The Independent: Ministers urged to scrap DNA records of innocent people
  35. ^ Times Online: DNA database ‘puts innocent under suspicion'
  36. ^ Nuffield Council on Bioethics (2007) Public health: ethical issues (London: Nuffield Council on Bioethics)
  37. ^ Department of Health (2010) Healthy lives, healthy people: our strategy for public health in England (London: Department of Health)
  38. ^ Nuffield Council on Bioethics (2009) Dementia: ethical issues (London: Nuffield Council on Bioethics)
  39. ^ Department of Health (2010) ‘Nothing Ventured, Nothing Gained’: Risk Guidance for people with dementia (London: Department of Health)
  40. ^ Nuffield Council on Bioethics (2007) Public health: ethical issues (London: Nuffield Council on Bioethics)
  41. ^ Killoran, A. & White, P. (2010) NICE public health guidance J Public Health 32: 136-137
  42. ^ House of Lords Science and Technology Committee (2009) Genomic Medicine p. 55 & 56 (London: Authority of the House of Lords)
  43. ^ Nuffield Council on Bioethics (2006) Critical care decisions in fetal and neonatal medicine: ethical issues (London: Nuffield Council on Bioethics)
  44. ^ Wilkinson, A.R et al. (2009) The Management of Babies born Extremely Preterm at less than 26 weeks of gestation. A Framework for Clinical Practice at the time of Birth Archives of Disease in Childhood - Fetal and Neonatal Edition 2009 94: 2-5
  45. ^ Nuffield Council on Bioethics (2007) The forensic use of bioinformation: ethical issues (London: Nuffield Council on Bioethics)
  46. ^ Case of S. and Marper v. the United Kingdom 4 Dec 2008
  47. ^ Nuffield Council on Bioethics (2007) Public health: ethical issues (London: Nuffield Council on Bioethics)
  48. ^ House of Lords debate on alcohol recommendations 12 Dec 2007
  49. ^ Nuffield Council on Bioethics (2007) Public health: ethical issues (London: Nuffield Council on Bioethics)
  50. ^ House of Commons debate on the Health and Social Care Bill 26 Nov 2007
  51. ^ Nuffield Council on Bioethics (2007) Public health: ethical issues (London: Nuffield Council on Bioethics)
  52. ^ House of Commons debate on 24 hr drinking 15 Nov 2007
  53. ^ Nuffield Council on Bioethics (2002) The ethics of research related to healthcare in developing countries (London: Nuffield Council on Bioethics)
  54. ^ World Health Organisation on behalf of the Special Programme for Research and Training in Tropical Diseases (2007) Ethical challenges in study design and informed consent for health research in resource-poor settings p.5
  55. ^ Nuffield Council on Bioethics: How is the Council funded?
  56. ^ Nuffield Council on Bioethics: How does the Council ‘do’ ethics?
  57. ^ Nuffield Council on Bioethics: An external review of the Council’s ethics

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