Don't Go Taking My Heart: A New Model for Organ Donation Law and Consent
| Author | Hay-Ching Tang |
| Position | University of Southampton |
| Pages | 14-33 |
[2019] Vol.9
14
Don’t Go Taking My Heart: A New Model for Organ Donation Law and Consent
Hay-Ching Tang
University of Southampton
Abstract
In light of continued disparity between registered organ donors and patients in need of a transplant,
this article seeks to evaluate purported solutions as enacted by the UK and other governments, with
particular focus on the current explicit consent and proposed presumed consent models. The article
seeks to view Organ Donation law in the UK through a wide lens, focusing not only on results achieved
but also on policy underpinning the law and effect on public perception and trust in the aftermath of
Alder Hey. The explicit consent system (Human Tissue Act 2004) falls short of delivering sufficient
organs for transplant; and the presumed consent system (Organ Donation (Presumed Consent) Act
2019) falls short of meeting policy objectives and individual autonomy. A third solution is proposed
here: mandated choice with multiple donation options, coupled with full reform to the registration
system and introducing a duty for politicians to publicly educate.
I. Introduction
s an issue which necessitates planning for the eventuality of death, Organ Donation is a
topic which many people understandably shy away from in their everyday lives; only 49%
of people have discussed the topic with others.1 Donating organs and the discussion around
doing so are however of increasing importance. In 2018 alone, over 1,000 people died in the UK while
awaiting transplant.2 With an ageing population demographic, this figure is only set to rise.3
1 ‘Hundreds of Transplants Missed Each Year Because Families Don’t Know What Relatives Wanted’ NHS Organ
Donation (5 September 2015) .organdonation.nhs.uk/news-and-campaigns/news/hundreds-of-transplants-
missed-each-year-because-families-don-t-know-what-relative-wanted/> accessed 1 August 2018.
2 NHS Blood and Transplant, Organ Donation and Transplantation: Activity Report 2017/18 (NHS Blood and
Transplant, 2018) 2.
3 NHS Blood and Transplant, Taking Organ Transplantation to 2020: A Detailed Strategy (NHS Blood and Transplant,
2013) 10.
A
[2019] Vol.9
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With the exception of Wales, the UK position on Organ Donation currently remains an ‘explicit
consent’ system. Initiation of the Consent process is in the hands of the individual. Whereby, if an
individual chooses to sign up their name will appear in the National Organ Donation Register (‘ODR’).
Current figures show that 24.9 million people in the UK are registered donors.4 While this is to be
applauded, there remains an enormous imbalance between the number of actual deceased donors and
the number of patients awaiting a transplant; over 6,000 people remain on the waiting list.5
Within that group, people from a Black, Asian or Minority Ethnic (BAME) background are
disproportionately affected due to higher proclivity towards certain diseases, but with a lower
proportion of registered donors.6 Since a viable organ match is more likely to come from someone
from a similar ethnic background, in the most extreme case, an Asian patient will wait close to 3 years
for a lung transplant; a white patient may wait 8 months.7 For BAME patients therefore the disparity
is magnified.
Despite the stark statistics, the UK position has greatly improved over the past decade. The Organ
Donation Taskforce (‘ODT’), a government-commissioned unit, was set up in 2006 to identify barriers
to Organ Donation. A report followed in 20088 with policy-based recommendations including better
identification of potential donors, increased donation-specific staff and a nationalised (rather than
regionalised) system. This led to a holistic overhaul of the practical donation system. A consequent
NHS report attributed the dramatic 50% increase in deceased organ donors by 2016 to the
implementation of these recommendations, specifically the introduction of specialist nurses and
centralisation of the system.9 However, the same report determined that the UK is still far from hitting
Organ Donation targets for 2020. It has therefore been argued by activists that new shifts in law and
policy must be enacted to progress further. The Organ Donation (Deemed Consent) Act is due to bring
presumed consent into force in 2020. This paper is divided into two parts. The first part of this paper
4 NHS Blood and Transplant, Organ Donation and Transplantation: Activity Report 2017/18 (n 2) 115.
5 ibid 2.
6 ibid 17.
7 NHS Blood and Transplant, Organ Donation and Transplantation data for Black, Asian and Minority Ethnic (BAME)
communities (NHS Blood and Transplant, 2018)
organ-donation-and-transplantation-data-2017-18.pdf> accessed 10 August 2018, 15.
8 Organ Donation Taskforce, Organs for Transplants: A Report from the Organ Donation Taskforce (London:
Department of Health, 2008).
9 NHS Blood and Transplant, Taking Organ Transplantation to 2020 (n 3) 1.
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