Should we presume consent for organs?

Prime Minister Theresa May has announced plans to introduce a soft ‘opt-out’ (also known as presumed consent) system for organ donation in the UK. Under this system, all adults will automatically consent to donating their organs on death, unless they specifically choose not to by actively opting out.

This is a response to the shortage of organs available for transplantation, with around 6,500 people on the waiting list at any one time, and only 4,750 transplants performed in 2016-17. Public campaigns to encourage people to sign up to the Organ Donor Register (ODR) have been modestly successful, with 37% of the population registered to the ODR in 2017, compared to just 33% in 2014. Nevertheless, supply continues to fall well short of demand, and three people die each day waiting for an organ. In the future, we may well be able to engineer artificial organs or alleviate need through xenotransplantation. In the meantime, we rely on the altruism of human donors.

Changing this default position would represent a positive endorsement of organ donation, and hopefully encourage donation to be seen as the norm, rather than the exception.

Presumed consent is an attractive model. It closes the inertia gap without compelling anyone to donate. Countries such as Belgium, Spain and Austria show evidence of a correlation between opt-out systems of consent and high donation rates. This may be because the default position affects deceased donation rates. Where the family knows the deceased’s wishes, in a vast majority of cases family members will make consent decisions in accordance with these. However, where they are not known, families often resort to the default position which, in the UK currently, is against donation. Changing this default position would represent a positive endorsement of organ donation, and hopefully encourage donation to be seen as the norm, rather than the exception. If an opt-out system were to substantially increase the number of organs available for transplant, this would be a strong argument in favour of change, given the benefit that could be achieved as a result.

No simple causal link

However, changes in legislation in countries where presumed consent has been successfully employed take place in the context of better infrastructure, increased funding for transplant programs and public awareness campaigns, making it difficult to assess the exact contribution of presumed consent legislation alone. As Spain will attest, organisational change, not legislation, has been the key to their success. Sweden, Greece and Bulgaria all have lower donation rates than the UK, despite operating under the presumed consent model. Indeed, the most recent available figures from Wales’ adoption of the system in December 2015, shows a small decrease in deceased donors since the same period the previous year. Although variability is to be expected, they don’t show the obvious increase in donations that were hoped for.

Presumed consent, or presumed lack of objection?

There are also ethical concerns around compromising consent. Presumed consent legislation is based on the legal fiction that people who have done nothing - neither signed an opt-in nor opt-out register - have deliberately chosen to donate their organs. The Human Tissue Authority (HTA) is very clear that consent is an active process; passive consent is insufficient. There might also be legal questions about whether any programme would satisfy the requirements for consent under the forthcoming General Data Protection Regulation, i.e. be sufficiently specific, unambiguous and signified by clear affirmative action. Whilst in some circumstances silence can constitute tacit consent, this relies on the presumption that we are all aware that silence will be interpreted in this way. Those who feel strongly enough to act under this system are able to opt-out; however, ethical qualms exist regarding those who are either unaware of the significance of their silence, or unwilling to oppose the default position. Presumed consent imposes a policy which to some extent relies upon the reluctance or ignorance of citizens for its success, albeit with a commendable motive.

Presumed consent imposes a policy which to some extent relies upon the reluctance or ignorance of citizens for its success, albeit with a commendable motive.

Who owns your organs?

It is well established in law that there is no property in a dead body. However, under an opt-out scheme, control over a corpse’s organs would automatically default to the state (in the absence of registering a preference or strong family objection). The implication that the state owns our bodies, albeit when we have no further use for them, may cause some concerns and potentially risk undermining the trust that people currently have in the donation system.

As with giving blood, donating one’s organs is an act demonstrating social conscience or sense of civic duty; it allows us to feel we have done something good. In the absence of informed consent, the perception of donation could shift, from ‘giving’ to ‘taking’. Might people who are civically active and who currently provide consent to organ donation switch to actively opting-out from donation as a form of general protest?

A national conversation

In order to overcome these issues and minimise potential accusations of exploitation, there would need to be a significant and sustained communications programme to ensure that all members of UK society understood the new system and what it means for them. Indeed, fear of an anti-donation backlash is one reason why the Organ Donation Taskforce recommended that the law should not change back in 2008.

But perhaps what is needed is open public debate. Fiona Loud, Policy Director at Kidney Care UK, highlighted that the public consultation to be held later in the year will ‘drive a national conversation about organ donation’. Whether you agree with presumed consent or not, raising the visibility of this issue and in particular, the plight of those that languish on organ donation waiting lists can only be a positive thing. Exposure to these arguments, both for and against, might be the best way to snap people out of their inertia.