The impact of the new Welsh organ donation laws on personal autonomy.

Consent is a fundamental principle within UK law, and medical law in particular. Without a person’s full and informed consent doctors cannot do anything to a patient, no matter how minor or major a procedure may be. If doctors do anything without consent, they could potentially face criminal action for assault and battery, or civil charges for negligence. A major part of living in a capitalist society is the freedom to have personal choice, to say yes or no as you will, regardless of what others may think.

The 2001 Kennedy and Redfern Inquiry found that doctors at a number of hospitals were retaining children’s organs, either without asking parents at all, or only asking to retain ‘tissue’ which many outside of the medical profession would not think included whole organs. This was known as the Alder Hey scandal and led the Government to re-write organ donation laws to try and regain the trust of the public.

Since Alder Hey the current English law on organ donation, the Human Tissue Act 2004, holds consent at its founding principle.  This requires a positive act from people to go out of their way to actively sign up to the organ donation register, something that many, including a large number of people who would consent, for whatever reason never get around to.  Studies have found that around 90% of people approve of the concept of organ donation yet only approximately one third of the UK’s adult population have signed up to the NHS Organ Donation Register (ODR). This has resulted in a severe lack of organs available for transplant and as a result in 2010 officially 511 people died while on the transplant waiting list. Unofficially it could be many more as people may have died without reaching the waiting list.[1] Harris has described this as a ‘terrible and unnecessary tragedy’.[2] 1174 people have donated their organs since 1st April 2014, but there are 6872 people on the waiting list in need of a transplant.[3]

This gap between those who have signed up, and those who haven’t but would not mind donating their organs, alongside the massive shortage of available organs, is the key reason why the Welsh Government have now introduced what Welsh First Minister Carwyn Jones has called, ‘the most significant piece of legislation passed by the National Assembly for Wales since it acquired full lawmaking powers in 2011’.  The Human Tissue (Wales) Act 2013 changes the burden of consent to one of opt-out, meaning that qualifying individuals (those 18 and over and living in Wales for at least 12 months) will have to actively opt-out of the organ donation system if they don’t wish for their organs to be retained. In other words, a person’s consent will be presumed for them.

There was significant consultation on the Welsh bill with the vast majority of the respondents basing any opposition to the Act on the view that it is ‘not in fact possible to deem/presume a person’s consent and that to use the words “deemed” and “consent” together risk undermining the entire concept of consent, which is the standard applied to all other health-related interventions’[4]

This is the main legal and ethical argument against any system based on presumed consent. Consent is the fundamental concept of the UK’s organ donation system and is one of the primary instruments of patient autonomy, a ‘centrepiece of medical ethics’.[5] It has been argued that presumed consent is a ‘misnomer’[6] and in fact if we presume consent then there is no consent at all. Therefore a person’s autonomy is undermined as, under all other forms of medical law (apart from emergencies), silence cannot amount to consent. McLachlan succinctly sums up this argument:

To say that it can reasonably be presumed that we consent to donate our organs if we do not specifically say that we do not consent is absurd. It is a deceitful piece of sophistry… If consent matters in this area, then only the explicit consent of the people concerned can justify the using of their organs after their deaths. If consent does not matter and the use of their organs can be justified without it, then consent does not matter. We should not appeal to the bogus notion of presumed consent.[7]

Supporters of the argument that presumed consent is not consent at all claim that to remove a person’s organs without their explicit consent is unethical, particularly given that many religions place a strong emphasis on after-life ceremonies, each with differing view on what should happen to a person’s body after their death. It is claimed that a system where consent is presumed for everyone, irrespective of different moral and religious values, fails to uphold individual autonomy.

This is a strong argument against any system based on presumed consent, as such an opt-out system couldn’t not fail to have some impact on personal autonomy. Despite individual autonomy potentially being undermined, an argument for presumed consent is that more people’s actual wishes will be met if their consent is presumed. As many studies have shown, there is a sizeable gap between the number of people who agree with the principle of organ donation and the number who have actually signed up to the ODR. Therefore it can be said that on a number of occasions the deceased’s wishes are not being met by the current system, as the default position of an opt-in system is that people who have not explicitly stated their wishes cannot have their organs donated. Herring poses the question ‘which is worse, not to have your organs removed when you would have wanted them to be, or to have your organs removed post-mortem when you would not have wanted them to be’.[8]

Given that families also have a significant say in whether organs are retained, it has been argued that changing the default position to automatically consenting it takes a substantial weight off grieving relatives.[9] As Cohen states ‘we ask the wrong persons, at the worst possible times, questions they should never have to be asked’.[10] Approximately 40% of relatives opt for the current default position[11], not to donate, potentially regardless of the deceased’s wishes, given it was found in a 2005 survey that 51% of people had never discussed the topic with family.[12] It can be argued that by changing the underlying presumption to presuming donation it takes pressure off both the family, and the clinician having to ask the difficult questions.

In my opinion while an opt-out system will result in a slight infringement on personal autonomy, the potential for a large increase in donation rates justifies this infringement, especially as it has been made easy to opt-out of the new default position. If someone wants to exercise their autonomy they can simply by opting out. Furthermore, the current opt-in system is limited in its future application, as there will always be those that support organ donation who will fail to sign up to the ODR, or inform their families of their personal views. The only viable way in which these people’s wishes can be met is via an opt-out system.

(This is an extremely brief overview of this sensitive topic. For anyone interested please contact either myself or THWBlog and we would be happy to send out a copy of my dissertation which examines this subject in much greater detail).

If you have any comments on this topic, please do share them and we will reply as quickly as possible. Thanks to Sam for writing this article for THWBlog and we hope you have enjoyed it! If you’d like to see more articles from THWBlog, take a look at our sites ‘Home’ page. Alternatively, you can ‘like’ us on Facebook and follow us on Twitter.

[1] (n 5) 445.

[2] (n 29).

[3] NHS, <http://www.organdonation.nhs.uk> last accessed 16th March 2015.

[4] Welsh Government, 2012, ‘Consultation- summary of responses’ <http://gov.wales/docs/dhss/consultation/121203responsesen.pdf> last accessed 1st March 2015.

[5] V English and A Sommerville, ‘Presumed consent for transplantation: A dead issue after Alder Hey?’ [2003] JME 29(3), 147.

[6] David Price, Human Tissue in Transplantation and Research: A Model Legal and Ethical Donation Framework (1st, Cambridge University Press, Cambridge 2010) 124.

[7] H McLachlin, ‘Presumed consent is no consent at all’ [2008] BMJ 336.

[8] J Herring, Medical Law and Ethics (4th, Oxford University Press, Oxford 2012) 445..

[9] (n 97) 125.

[10] C Cohen, ‘The case for presumed consent to transplant human organs after death’ [1992] 24 Transplantation Proceedings, 2168.

[11] (n 69).

[12] (n 63).

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