Nuffield Council on Bioethics

Nuffield Council on Bioethics
Founded1991; 33 years ago (1991)
FocusExploring ethical issues in biology and medicine
Location
  • London, United Kingdom
WebsiteNuffield Council on Bioethics

The Nuffield Council on Bioethics is a UK-based independent charitable body, which examines and reports on bioethical 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] The Council has been described by the media as a 'leading ethics watchdog',[2] which 'never shrinks from the unthinkable'.[3]

Purpose

The Nuffield Council on Bioethics was set up in response to concerns about the lack of a national organization responsible for evaluating the ethical implications of developments in biomedicine and biotechnology.[4] Its terms of reference[5] are:

  • To identify and define ethical questions raised by recent developments in biological and medical research that concern, or are likely to concern, the public interest;
  • To make arrangements for the independent examination of such questions with appropriate involvement of relevant participants;
  • To inform and engage in policy and media debates about ethical questions and provide informed comment on emerging issues related to or derived from the Council’s published or ongoing work; and
  • To make policy recommendations to Government or other relevant bodies and to disseminate its work through published reports, briefings and other appropriate outputs.

How the Council works

The Council selects topics to examine through a horizon scanning programme, which aims to identify developments relevant to biological and medical research. Members of the Council meet quarterly to discuss and contribute to ongoing work, review recent advances in medical and biological research that raise ethical questions and choose topics for further exploration. The Council is well known for its in-depth inquiries which usually take 18–24 months and are overseen by an expert working group, informed by extensive consultation and research.[6]

Membership and governance

The Chair of the Nuffield Council on Bioethics is appointed by the Nuffield Foundation in consultation with the other funders. Chairs are appointed for five years. Council 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 advertises widely. The council's membership advisory group considers and makes recommendations to the council on future members selected from the respondents to advertisements.[7]

Governing board

The governing board was established by the funders of the council in 2017 and holds the principal responsibility for the governance of the NCOB, overseeing its operations and providing assurance that it is working within the terms of its grant.[8] The chair (distinct from the chair of the council) is Professor Jane Macnaughton (Durham University) with other members Dr Sarion Bowers (University of Cambridge), Professor Adam Hedgecoe (Cardiff University), Dr Katherine Littler (World Health Organisation) and three representatives of the funders.[9]

Chair

Director

Danielle Hamm was appointed in June 2021

Former Directors:

  • Hugh Whittall
  • Professor Sandy Thomas
  • David Shapiro

Members

Current[12]

Previous members[12]

Publications

  • Genome editing and human reproduction: social and ethical issues (July 2018) [13]
  • Human embryo culture: Discussions concerning the statutory time limit for maintaining human embryos in culture in the light of some recent scientific developments (August 2017) [14]
  • Cosmetic procedures: ethical issues (June 2017) [15]
  • Non-invasive prenatal testing: ethical issues (March 2017) [16]
  • Genome editing: an ethical review (September 2016) [17]
  • (un)natural: Ideas about naturalness in public and political debates about science, technology and medicine (December 2015)[18]
  • Children and clinical research: ethical issues (May 2015)[19]
  • The collection, linking and use of data in biomedical research and healthcare: ethical issues (February 2015)[20]
  • The findings of a series of engagement activities exploring the culture of scientific research in the UK (December 2014)[21]
  • Novel neurotechnologies: intervening in the brain (June 2013)[22]
  • Donor conception: ethical aspects of information sharing (April 2013)[23]
  • Emerging biotechnologies: technology, choice and the public good (December 2012)[24]
  • Novel techniques for the prevention of mitochondrial DNA disorders: an ethical review (2012)[25]
  • Human bodies: donation for medicine and research (2011) [26]
  • Biofuels: ethical issues (2011) [27]
  • Medical profiling and online medicine: the ethics of 'personalised healthcare' in a consumer age (2010) [28]
  • Dementia: ethical issues (2009)[29]
  • Public health: ethical issues (2007)[30]
  • The forensic use of bioinformation: ethical issues (2007)[31]
  • Critical care decisions in fetal and neonatal medicine: ethical issues (2006)[32]
  • Genetic Screening: a Supplement to the 1993 Report by the Nuffield Council on Bioethics (2006)[33]
  • The ethics of research involving animals (2005)[34]
  • The ethics of research related to healthcare in developing countries: a follow-up Discussion Paper (2005)[35]
  • The use of genetically modified crops in developing countries: a follow-up Discussion Paper (2003)[36]
  • Pharmacogenetics: ethical issues (2003)[37]
  • Genetics and human behaviour: the ethical context (2002)[38]
  • The ethics of patenting DNA: a discussion paper (2002)[39]
  • The ethics of research related to healthcare in developing countries (2002)[40]
  • Stem cell therapy: the ethical issues – a discussion paper (2000)[41]
  • The ethics of clinical research in developing countries: a discussion paper (1999)[42]
  • Genetically modified crops: the ethical and social issues (1999)[43]
  • Mental disorders and genetics: the ethical context (1998)[44]
  • Animal-to-human transplants: the ethics of Xenotransplantation (1996)[45]
  • Human tissue: ethical and legal issues (1995)[46]
  • Genetic screening: ethical issues (1993)[47]

Influence

The Council's recommendations to policy makers have often been described as 'influential'.[48][49][50][51][52][53]

Funding

The Council was entirely funded by the Nuffield Foundation from 1991 to 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.[54] Towards the end of each five-year period, a process of external review is a condition of continued support. Funding has been confirmed until 2022 following the satisfactory completion of the latest funding bid.[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. ^ BBC, Ethics backing for tailored drugs
  3. ^ The Guardian, Organ transplants: Relative ethics
  4. ^ Whittall, H. (2008) A closer look at the Nuffield Council on Bioethics Clin Ethics 3:199–204 (p.199)
  5. ^ Nuffield Council on Bioethics: About Us
  6. ^ How the Council works
  7. ^ How are Council members selected?
  8. ^ "Governance". NCOB. Retrieved 9 August 2024.
  9. ^ "New Chair and Members announced for the Governing Board of the Nuffield Council on Bioethics". Nuffield Foundation. 8 August 2024. Retrieved 9 August 2024.
  10. ^ "Sarah Cunningham-Burley announced as new chair of Nuffield Council on Bioethics". Nuffield Foundation. 28 April 2023. Retrieved 9 August 2024.
  11. ^ "Nuffield Council on Bioethics, Council Members". Retrieved 14 April 2017.
  12. ^ a b References on linked pages.
  13. ^ Nuffield Council on Bioethics (2018) Genome editing and human reproduction: social and ethical issues
  14. ^ Nuffield Council on Bioethics (2017) Human embryo culture: Discussions concerning the statutory time limit for maintaining human embryos in culture in the light of some recent scientific developments
  15. ^ Nuffield Council on Bioethics (2017) Cosmetic procedures: ethical issues
  16. ^ Nuffield Council on Bioethics (2017) Non-invasive prenatal testing: ethical issues
  17. ^ Nuffield Council on Bioethics (2016) Genome editing: an ethical review
  18. ^ http://nuffieldbioethics.org/project/naturalness Nuffield Council on Bioethics: Naturalness
  19. ^ "Children and clinical research – Nuffield Bioethics". Nuffield Bioethics. Retrieved 27 July 2015.
  20. ^ "Biological and health data – Nuffield Bioethics". Nuffield Bioethics. Retrieved 27 July 2015.
  21. ^ "The culture of scientific research – Nuffield Bioethics". Nuffield Bioethics. Retrieved 27 July 2015.
  22. ^ Neurotechnology – Nuffield Bioethics
  23. ^ Donor conception – Nuffield Bioethics
  24. ^ Emerging biotechnologies – Nuffield Bioethics
  25. ^ Mitochondrial DNA disorders – Nuffield Bioethics
  26. ^ Nuffield Council on Bioethics (2011) Human bodies: donation for medicine and research"(London: Nuffield Council on Bioethics)
  27. ^ Nuffield Council on Bioethics (2011) Biofuels: ethical issues (London: Nuffield Council on Bioethics)
  28. ^ Nuffield Council on Bioethics (2010) Medical profiling and online medicine: the ethics of personalised healthcare in a consumer age (London: Nuffield Council on Bioethics)
  29. ^ Nuffield Council on Bioethics (2009) Dementia: ethical issues (London: Nuffield Council on Bioethics)
  30. ^ Nuffield Council on Bioethics (2007) Public health: ethical issues (London: Nuffield Council on Bioethics)
  31. ^ "Nuffield Council on Bioethics (2007) The forensic use of bioinformation: ethical issues (London: Nuffield Council on Bioethics)". Archived from the original on 1 October 2009. Retrieved 13 March 2009.
  32. ^ "Nuffield Council on Bioethics (2006) Critical care decisions in fetal and neonatal medicine: ethical issues (London: Nuffield Council on Bioethics)". Archived from the original on 15 January 2009. Retrieved 13 March 2009.
  33. ^ "Nuffield Council on Bioethics (2006) Genetic Screening: a Supplement to the 1993 Report by the Nuffield Council on Bioethics (London: Nuffield Council on Bioethics)". Archived from the original on 15 January 2009. Retrieved 13 March 2009.
  34. ^ Nuffield Council on Bioethics (2005) The ethics of research involving animals (London: Nuffield Council on Bioethics)
  35. ^ 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)
  36. ^ Nuffield Council on Bioethics (2003) The use of genetically modified crops in developing countries: a follow-up Discussion Paper (London: Nuffield Council on Bioethics)
  37. ^ "Nuffield Council on Bioethics (2003) Pharmacogenetics: ethical issues (London: Nuffield Council on Bioethics)". Archived from the original on 13 July 2010. Retrieved 13 March 2009.
  38. ^ Nuffield Council on Bioethics (2002) Genetics and human behaviour: the ethical context (London: Nuffield Council on Bioethics)
  39. ^ Nuffield Council on Bioethics (2002) The ethics of patenting DNA: a discussion paper (London: Nuffield Council on Bioethics)
  40. ^ Nuffield Council on Bioethics (2002) The ethics of research related to healthcare in developing countries (London: Nuffield Council on Bioethics)
  41. ^ Nuffield Council on Bioethics (2000) Stem cell therapy: the ethical issues (London: Nuffield Council on Bioethics)
  42. ^ Nuffield Council on Bioethics (1999) The ethics of clinical research in developing countries: a discussion paper (London: Nuffield Council on Bioethics)
  43. ^ Nuffield Council on Bioethics (1999) Genetically modified crops: the ethical and social issues (London: Nuffield Council on Bioethics)
  44. ^ Nuffield Council on Bioethics (1998) Mental disorders and genetics: the ethical context (London: Nuffield Council on Bioethics) Archived 15 January 2009 at the Wayback Machine
  45. ^ Nuffield Council on Bioethics (1996) Animal-to-human transplants: the ethics of Xenotransplantation (London: Nuffield Council on Bioethics) Archived 20 April 2009 at the Wayback Machine
  46. ^ "Nuffield Council on Bioethics (1995) Human tissue: ethical and legal issues (London: Nuffield Council on Bioethics)". Archived from the original on 15 January 2009. Retrieved 13 March 2009.
  47. ^ Nuffield Council on Bioethics (1993) Genetic screening: ethical issues (London: Nuffield Council on Bioethics) Archived 15 January 2009 at the Wayback Machine
  48. ^ https://www.the-scientist.com/news-opinion/bioethics-council--gene-editing-human-embryos-conditionally-ok-64508 The Scientist: Bioethics Council: Gene-Editing Human Embryos Conditionally OK
  49. ^ The Telegraph: How to futureproof your kids – the physical health timebomb
  50. ^ BBC News: GM crops 'good for developing countries'
  51. ^ The Independent: Ministers urged to scrap DNA records of innocent people
  52. ^ Times Online: DNA database ‘puts innocent under suspicion'
  53. ^ Nature News blog: Egg donor ‘compensation’ increased in UK
  54. ^ "The Nuffield Council on Bioethics".
  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 Archived 20 November 2008 at the Wayback Machine

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