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Donation and Devolution: The Human Transplantation (Wales) Act 2013

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Organ Transplantation in Times of Donor Shortage

Part of the book series: International Library of Ethics, Law, and the New Medicine ((LIME,volume 59))

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Abstract

This paper will explore some of the arguments surrounding systems of consent for cadaveric organ donation through an examination of the National Assembly for Wales’ (NAW) law (The Human Transplantation (Wales) Act 2013) that departs from the current United Kingdom (UK) system of opt in donation in favour of a system of opt out donation, under which, consent is deemed (i.e. presumed) as a matter of course in the absence of an explicit refusal (with certain exceptions). This law, which is due to come into force in December 2015, is aimed at increasing the supply of organs and thus reducing the organ shortage. It represents a bold step for a devolved government with limited legislative powers within part of a member state of the European Union (EU).

This paper will, however, raise concerns over the assumptions behind the projected increase in the rate of donation, as well as with the practicalities of implementing the proposed law within an EU member state, with the popular support for this legislation and with the strength of the ethical case which underpins it.

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Notes

  1. 1.

    It is possible that the numbers on this waiting list do not represent the total number of those who might benefit from a transplant operation, as not everyone in need may be on the waiting list.

  2. 2.

    http://www.organdonor.gov/index.html, accessed 17th May 2013.

  3. 3.

    http://www.eurotransplant.org/cms/, accessed 10th January 2013, NB: the Eurotransplant area includes a number of European countries.

  4. 4.

    In March 2012. A further 2880 were temporarily suspended from the waiting list at this time: NHSBT (2012, p. 2).

  5. 5.

    Wales is a part of the United Kingdom, inhabited by 3.1 m people (4.9 % of the UK population), which through a process of devolution that began in 1997, now has a semi-autonomous status insofar as it has the power to create its own binding legislation in certain legislative areas through the NAW. Healthcare is one area of legislative competence and it is this area of legislative competence which is relied upon in the creation of the current Bill under discussion.

  6. 6.

    As well as the other countries of the UK i.e. Scotland and Northern Ireland under separate legislation specific to those places. See Human Tissue Act (Scotland) 2006.

  7. 7.

    E.g. xenotransplantation, dispensing with the ‘dead donor rule’, or, at the most extreme, ending people’s lives deliberately and at random in order that their organs could be distributed to eliminate the organ shortage as John Harris hypothesised in the Survival Lottery (1975).

  8. 8.

    Even though there had already been significant improvements in donation rates by this point. For instance the number of kidney donations increased by 93 % between 2000 and 2006 (ODT 2008b, p. 1.9).

  9. 9.

    Although most major religions do not prohibit organ donation: NHSBT 2005. http://www.organdonation.nhs.uk/how_to_become_a_donor/religious_perspectives/leaflets/summary_leaflet.asp accessed 6th June 2013.

  10. 10.

    The Nuremburg Code 1947: principle 1 http://www.bmj.com/content/313/7070/1448.1, accessed 25th March 2012 and Chester v Afshar [2004] UKHL 41 [14].

  11. 11.

    Which was known as the Human Transplantation (Wales) Bill 2012 (HTWB) prior to its enactment.

  12. 12.

    http://www.bbc.co.uk/news/uk-wales-22104275, accessed 8th May 2013.

  13. 13.

    The uptake level was 92 % in 1995 and fell to 80 % in 2003/2004: See http://www.hpa.org.uk/Topics/InfectiousDiseases/InfectionsAZ/MMR/GeneralInformation/, accessed 6th June 2013.

  14. 14.

    http://www.sueddeutsche.de/gesundheit/sinkende-spendebereitschaft-organspenden-brechen-um-prozent-ein-1.1657743, accessed 6th June 2013.

  15. 15.

    >http://www.sueddeutsche.de/thema/Organspende-Skandal, accessed 6th June 2013.

  16. 16.

    i.e. 2657 of 2891 respondents.

  17. 17.

    The professional representative body and trade union for doctors in the UK.

  18. 18.

    This happened recently in Turkey, and the recipient is currently pregnant: http://www.guardian.co.uk/uk/2013/may/03/womb-transplant; see also: http://www.bbc.co.uk/news/world-europe-19637156, accessed 8th May 2013.

  19. 19.

    See https://www.organdonation.nhs.uk/how_to_become_a_donor/registration/registration_form.asp (step 2), accessed 14th Jan 2013.

  20. 20.

    The Health Minister has indicated that “limbs and face transplants” will be excluded (Saul 2013).

  21. 21.

    Draft Regulations, under the title “The Human Transplantation (Excluded Relevant Material) (Wales) Regulations 2015” have now been created for the approval of the National Assembly for Wales. English law takes the same position on this point (s 3(2) HT Act).

  22. 22.

    NB The HT Act operates in the opposite direction to this: i.e. it is possible for those in a qualifying relationship to grant consent on behalf of the deceased in respect of certain matters s 3(6)(c)HT Act.

  23. 23.

    The Nuffield Council on Bioethics has recommended that people in the rest of the UK should also have the right to register an objection to becoming a donor on the ODR as well as a wish to become a donor (2011,Para, 6.55)

  24. 24.

    This form of norm-adjusting legislation is in line with the influential policy movement based around the concept of the ‘nudge’ which is designed to operate within liberal systems of government to adjust choice frameworks in order to shape choices (Thaler and Sunstein 2008).

  25. 25.

    This is sometimes referred to as a system of “conscription” (see Price 2010, p. 44).

  26. 26.

    Although the explantation of organs may still be prevented for persons classified as residents under s 4(4)(b) HTWA.

  27. 27.

    The current opt-in system might be criticised for lacking the possibility of making a meaningful and timely assessment of mental capacity, but as there is a presumption of capacity, the burden lies on the party seeking to prove that capacity was lacking. By contrast, under the HTWA, the reasonable person must consider whether the potential donor would have been assessed as having capacity at a point in time when they are imagined to have considered the question of becoming an organ donor. This test contradicts a central principle of the MCA.

  28. 28.

    http://bma.org.uk/news-views-analysis/news/2013/april/opt-out-organ, accessed 6th June 2013.

References

Online Sources

Cases and Legislation

  • U v Centre for Reproductive Medicine [2002] EWCA Civ 565.

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  • Chester v Afshar [2004] UKHL 41 (HL).

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  • Convention for the Protection of Human Rights and Fundamental Freedoms (European Convention on Human Rights as amended) (ECHR).

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  • Directive 2010/45/EU of the European Parliament and the Council of 7 July 2010 on standards of quality and safety of human organs intended for transplantation.

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  • Human Tissue Act 2004 c. 30 (HT Act).

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  • Human Tissue Act (Scotland) 2006 asp 4 (HTSAct).

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  • Human Transplantation (Wales) Bill 2012 (HTWB).

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  • Human Transplantation (Wales) Act 2013 anaw 5.

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Acknowledgments

An earlier version of this work was presented at the Ludwig-Maximilians Universität München at an Interdisciplinary Workshop on Organ Donation. I wish to thank the organisers and to all those who attended the workshop for their helpful comments and questions and especially to Katherine Mendis and Nathan Emmerich for acting as discussants on this paper. An earlier version of this work was also presented in Bristol at the Centre for Ethics in Medicine as part of the seminar series there and I extend my thanks to all those who attended and contributed to that session especially Richard Huxtable. I am also grateful to Manon George for discussing some aspects of Welsh law with me. I am responsible for any errors.

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Authors and Affiliations

  1. Cardiff Law School, Cardiff University, Cardiff, UK

    Tom Hayes

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  1. Tom Hayes
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Correspondence to Tom Hayes .

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Editors and Affiliations

  1. Institute of Ethics, History and Theory of Medicine, Ludwig-Maximilians-University Munich, Munich, Germany

    Ralf J. Jox

  2. Institute of Ethics, History and Theory of Medicine, Ludwig-Maximilians-University Munich, Munich, Germany

    Galia Assadi

  3. Institute of Ethics, History and Theory of Medicine, Ludwig-Maximilians-University Munich, Munich, Germany

    Georg Marckmann

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Hayes, T. (2016). Donation and Devolution: The Human Transplantation (Wales) Act 2013. In: Jox, R., Assadi, G., Marckmann, G. (eds) Organ Transplantation in Times of Donor Shortage. International Library of Ethics, Law, and the New Medicine, vol 59. Springer, Cham. https://doi.org/10.1007/978-3-319-16441-0_13

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