The need for great caution over organ donation law

The government is changing the law on organ donation. At the Conservative Party Conference in 2017 Mrs May announced that organs of deceased people can be taken and used for organ donation unless they have specifically opted out of this system. There will therefore be a presumption of consent by the deceased donor.

This is to be called ‘Max’s Law’ after thename of child whose life wassaved by an organ donated by another young person who died. The Prime Minister wrote toMax to say thatthe law was to be named after him because his story was so inspirational.Jackie Doyle-Price, Secretary of State for Mental Health and Inequalities, said the changes could save up to 700 lives every year, but she said organ donation remained a gift.

A BBC report contained the words of Carol, a mother of Hayley who died and whose organs were donated to help save lives, who said of the new law requiring opting out: “It’s a good thing because you’re taking the decision off the parents.” The change would bring England into linewith the law in Wales.Government policy had been to monitor the effects of the law in Wales on organ donation, to gather evidence and then make a decision.

The Nuffield Council on Bioethics has registered concern that the government has not kept to this process, but jumped to a decision to implement the Welsh system.Nuffield point out that a report commissioned by the Welsh Assembly Government (WAG) published on 30 November 2017 states that opt-out has not increased organ donations and in June the UK Government’s Health Minister Jackie Doyle-Price told Parliament “there has been no notable change in Welsh deceased donation figures” since an opt-out system for organ donation was introduced.Nuffield is therefore querying whether the promised rise in organ donation will in fact follow the new law, and they want more evidence from the monitoring of the Welsh experience, but that monitoring has stopped.

So the change in law might not deliver as presumed. In fact, Nuffield is worried that public faith in the organ donation system might be badly damaged if such a change be rushed through without the evidential base needed.

The system does require total trust by the public that their very sick loved ones will not be ‘allowed to die’ or ‘finished off’ because a very sick patient needs a donated organ badly. At present that trust does exist, but public trust in government and its apparatus is in steep decline and so anything that might damage it needs very careful evaluation. The new system in effect makes the body of your deceased loved one the property of the state, unless you object.

A recent controversial case, not apparently linked to organ donation, was of a disabled young child mistakenly classified by the Registrar as ‘not for resuscitation’, and the child died. This kind of case could possibly damage public confidence. The Nuffield Council is wise to counsel caution and the most careful evaluation of evidence before this change is implemented.