Use of Citizens' Juries to Address Complex Bioethical Challenges

Abstract

The ethical and social principles that guide decision making in relation to the human genome are well known. However, new bioethical challenges are emerging, such as gene editing, which require wider public discussion. One way of involving the public is by a Citizens' Jury. Originating almost 50 years ago, Citizens' Juries involve ordinary members of the public in policy discussions, not in their capacity as service users or consumers, but as citizens. The first Citizens' Jury in the United Kingdom on the topic of genetics took place in Wales in 1997. Whilst the method may vary, the fundamental premise remains the same; that given enough time and support, any person is capable of arriving at an informed decision about a complex policy matter. The defining characteristics of Citizens' Juries are that they are deliberative and inclusive and have an important role to play in addressing the new bioethical challenges that society faces.

Key Concepts

  • Complex bioethical challenges require public participation in policy making.
  • A Citizens' Jury involves the public in their capacity as citizens and not as users of services, or consumers, or members of specific interest groups.
  • The fundamental premise upon which every Citizens' Jury is based is that ordinary members of the public, given enough time, support and resources, are capable of arriving at decisions about complex policy matters.
  • The defining characteristics of Citizens' Juries are that they are deliberative and inclusive and have the aim of delivering high‐quality citizen input into any decision‐making process.
  • The complex bioethical challenges that society will face this century, such as human gene editing, are too important not to involve the public.

Keywords: Citizens' Jury; public participation; policy; methods; genetics; bioethical; challenges; Wales

References

Burgess M, O'Doherty K and Secko D (2008) Biobanking in British Columbia: discussions of the future of personalized medicine through deliberative public engagement. Personalized Medicine 5: 285–296.

Coote A and Lenaghan J (1997) Citizens' Juries: From Theory to Practice. London: Institute for Public Policy Research.

Crosby N (1995) Citizens' Juries: one solution for difficult environmental questions. In: Renn O, Webler T and Wiedelmann P (eds) Fairness and Competence in Citizen Participation: Evaluating Models for Environmental Discourse, pp. 157–174. Boston: Kluwer Academic Press.

Einsiedel EF and Ross H (2002) Animal spare parts? A Canadian public consultation on xenotransplantation. Science and Engineering Ethics 8: 579–591.

Elwood P and Longley MJ (2010) My health: whose responsibility? A jury decides. Journal of Epidemiology and Community Health 64: 761–764.

Huston P (2004) What does the public think of placebo use? The Canadian experience. Science and Engineering Ethics 10: 103–117.

Institute for Public Policy Research (1996) Citizens' Juries: Towards Best Practice. London: Institute for Public Policy Research.

Iredale R and Longley MJ (1999) Public involvement in policy making: the case of a Citizens' Jury on genetic testing for common disorders. Journal of Consumer Studies and Home Economics 23: 3–10.

Iredale R and Longley MJ (2000) Reflections on Citizens' Juries: the case of the Citizens' Jury on genetic testing for common disorders. Journal of Consumer Studies and Home Economics 24: 41–47.

Iredale R, Longley MJ, Thomas C and Shaw A (2006) What choices should we make about designer babies? A Citizens' Jury of young people in South Wales. Health Expectations 9: 207–217.

Paul C, Nicholls R, Priest P and McGee R (2008) Making policy decisions about population screening for breast cancer: the role of citizens' deliberation. Health Policy 85: 314–320.

Rogers WA, Street JM, Braunack‐Mayer AJ and Hiller JE (2009) Pandemic influenza communication: views from a deliberative forum. Health Expectations 12: 331–342.

Rogers‐Hayden T and Pidgeon N (2006) Reflecting upon the UK's citizens' jury on nanotechnologies: NanoJury UK. Nanotechnology Law & Business 3: 167–178.

Smith G and Wales C (2000) Citizens' juries and deliberative democracy. Political Studies 48: 51–65.

Street J, Duszynski K, Krawczyk S and Braunack‐Mayer A (2014) The use of citizens' juries in health policy decision‐making: a systematic review. Social Science and Medicine 109: 1–9.

Toni A and von Braun J (2001) Poor citizens' decide on the introduction of GMOs in Brazil. Biotechnology and Development Monitor 47: 7–9.

United Nations Educational, Scientific and Cultural Organization (UNESCO) (1997) Universal Declaration on the Human Genome and Human Rights. http://www.unesco.org/new/en/social‐and‐human‐sciences/themes/bioethics/human‐genome‐and‐human‐rights/ (accessed 6 January 2016)

United Nations Educational, Scientific and Cultural Organization (UNESCO) (2003) International Declaration on Human Genetic Data. http://www.unesco.org/new/en/social‐and‐human‐sciences/themes/bioethics/human‐genetic‐data/ (accessed 6 January 2016).

United Nations Educational, Scientific and Cultural Organization (UNESCO) (2005) Universal Declaration on Bioethics and Human Rights. http://www.unesco.org/new/en/social‐and‐human‐sciences/themes/bioethics/bioethics‐and‐human‐rights/ (accessed 6 January 2016).

United Nations Educational, Scientific and Cultural Organization (UNESCO) (2015) Report of the International Bioethics Committee Updating its Reflection on the Human Genome and Human Rights. http://unesdoc.unesco.org/images/0023/002332/233258e.pdf (accessed 6 January 2016).

Further Reading

Bennett P and Smith SJ (2007) Genetics, insurance and participation: how a Citizens' Jury reached its verdict. Social Science & Medicine 64: 2487–2498.

Blacksher E, Diebel A, Forest P, Dorr‐Goold S and Abelson J (2012) What is public deliberation? Hastings Centre Report 42: 14–17.

Fishkin J (1991) Democracy and Deliberation. New Haven, Connecticut: Yale University Press.

Kashefi E and Mort M (2004) Grounded Citizens' juries: a tool for health activism? Health Expectations 7: 290–302.

Longley MJ and Simpson A (2012) New Medicines for Serious Conditions: Weighing the Risks and Benefits. The Verdict of a Jury of Patients. London: Genetic Alliance UK. ISBN 978-0-9533596-1-5.

The Jefferson Center (2004) Citizens' Jury Handbook. Washington DC: The Jefferson Center.

Contact Editor close
Submit a note to the editor about this article by filling in the form below.

* Required Field

How to Cite close
Iredale, Rachel(May 2016) Use of Citizens' Juries to Address Complex Bioethical Challenges. In: eLS. John Wiley & Sons Ltd, Chichester. http://www.els.net [doi: 10.1002/9780470015902.a0026589]