UK: Organ Donation: Opt In Still The Only Option

Last Updated: 8 December 2008
Article by Ben Troke and Simon Tait

This month the Organ Donation Taskforce published another report into the system of organ donation. It rejects the idea of 'presumed consent' - where organs could routinely be removed from adults who die unless they have registered to opt out of the system.


This is, of course, not the first time that organ donation has been considered in recent years. It was only in September 2006 that the Human Tissue Act 2004 established a new legal framework for the removal and/or retention of human tissue following the Alder Hey scandal, which specifically emphasised the importance of prior explicit consent. The Organ Donation Taskforce itself last reported on the issue only in January this year, making 14 recommendations aimed at increasing the number of donors by 50% in five years.

The problem

There are currently over 8 000 people on the transplant waiting list (rising at 8% per year), but only 3000 transplants were possible last year and 1000 people died waiting for a suitable organ to become available. The urgent need to do something to improve these statistics led the Government to ask the Organ Donation Taskforce to look again at donation and specifically the impact of an opt out system. Such a system has vastly improved donation rates in other countries and has the apparent support of the majority of the British public, the British Medical Association and much of the Government itself.

The justification for an opt out system is obvious to its supporters: more organs available for transplant mean more lives saved. In addition, since repeated surveys have found up to 90% of people in favour of donating their organs, but less than 25% on the Organ Donation Register, it is argued that presuming consent rather than objection is actually more likely to achieve the wishes of a deceased person.

The report's findings

The taskforce considered both a 'soft' opt out system, where bereaved families may object to organs being removed, as well as a 'hard' opt out system, where only the deceased's registered objection can avoid donation. It found that there was little evidence to suggest that either opt out system would automatically lead to a rise in actual transplantations taking place without corresponding increases in donor coordinators to work with families, trained clinicians and intensive care beds.

Moreover, setting up an opt out system was considered to be fraught with practical difficulties including: the cost, ensuring the register accurately reflected people's views and was always up to date, ensuring people wishing to opt out had sufficient understanding and literacy to be able to do so, the potential for data misuse and the potential for legal claims under the Human Rights Act.

Ethical issues

There are also a number of ethical problems with the notion of presumed consent.

It is argued that 'presumed consent' is a contradiction in terms. Consent is either actively given or it is not, and a 'presumption of consent' is just a fiction. After all, if a patient lacks capacity to give consent, doctors act in the patient's 'best interests', not with their 'presumed consent'.

Opponents argue that the idea of presuming consent or, indeed, taking organs without explicit, active consent would seem to set a dangerous precedent and mark a return to a paternalistic era of medicine where the 'doctor knows best'. In an ever-individualised healthcare system where personal choice is paramount, making any decision for a patient would seem improper, let alone one which may clash with the patient's cultural, moral or religious views.

Such concerns are reflected in the views of both patient groups and some doctors who highlight the danger of eroding patients' trust in doctors. In particular, strong opposition to an opt out system has been found amongst intensive care specialists. They worry about the perception amongst patients and their families that they have a conflict of interest in acting in the best interest of the patient if they are also looking to harvest the patient' organs for others.

The ultimate question about an opt out system therefore remains unanswered: even if an opt out system would increase the number of organs available, can the ends really justify the means?

The future

The taskforce did not believe that an opt out system was either viable or necessary. Instead, it recommended increasing the numbers of people on the Organ Donation Register by a public awareness campaign.

While the Government have earmarked Ł4.5m for this over the next two years, it has refused to rule out the idea of an opt out system altogether if the campaign and taskforce's recommendations prove unsuccessful. The Welsh Health Minister, meanwhile, has already rejected an all-party Welsh Assembly report which similarly discounted an opt out system.

Needless to say, any unilateral introduction of an opt out system in Wales will itself have major implications for the current UK-wide transplant system. Should the Government choose to follow suit, it will be interesting to see how such a move will be received alongside the proposed introduction of Identity Cards and the perception of the 'nanny state' encroaching first on people's everyday lives, and now on their bodies.

The content of this article is intended to provide a general guide to the subject matter. Specialist advice should be sought about your specific circumstances.

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