Parliamentary bill fronted by nine-year-old boy spells landmark moment for organ donation

Everyone’s talking about Max’s Law

The Private Members’ Bill introduced by Geoffrey Robinson MP has passed its second reading in the House of Commons, in what has been described as a landmark moment for organ donation law that could help save hundreds of lives. Next stage: committee.

Passed without division, the Organ Donation (Deemed Consent) Bill intends to amend the Human Tissue Act 2004 by introducing an opt-out organ donation system whereby consent to donate organs in the event of death will be presumed unless the individual has opted out. The current opt-in system requires consent before tissues and organs are removed from a deceased person. An individual’s consent can be inferred from an express view made during their lifetime or by appointing a representative to consent on their behalf. If a decision on organ donation has not been made, at the moment of death the family will be asked to give consent.

The legislation will, Prime Minister Theresa May says, shift “the balance of presumption in favour of organ donation and [work] on behalf of the most vulnerable”.

The new law has been coined ‘Max’s Law’, in honour of nine-year-old Max Johnson who benefited from a heart transplant and has been campaigning to change the current legislation. In a letter to Max, May wrote: “When I read your inspirational story, I knew I had to act to change the organ donation rules to an opt-out system. I also read that you thought it would be fun to name the change in the rules after you. I think that is a brilliant idea, so, while it will have to have a bit of a boring title when it goes through parliament, I and my government will call it Max’s Law.”

The proposed reform, first announced by the Prime Minister in October 2017, comes at a time when, despite the significant increase in organ donation rates in the UK in the past decade, there is still a shortage of donors. NHS Blood and Transplant, the authority responsible for coordinating organ donation across the UK, reported that in 2016/2017 456 adults and 14 children died while on the transplant list and a further 157 people were removed from the list because they were too ill for surgery. There are currently 6,500 people on the donor waiting list.

"My beautiful friend got ‘the call’ and was gifted a new lease of life.. all thanks to a tremendously brave family saying ‘yes’ to organ donation at an extremely difficult time in their lives." #YesIDonate pic.twitter.com/06R74ML3UC

— NHS Organ Donation? (@NHSOrganDonor) February 23, 2018

The proposed opt-out system will put England in line with the approach currently adopted by Wales and the vast majority of European countries, while the Scottish government has announced its commitment to introducing legislation in the current parliamentary session. What England purports to create is a system similar to the one adopted in Spain — the country with the highest rate of organ donation and consent internationally. This ‘soft’ opt-out system includes authorised doctors removing organs from every adult who dies unless they have registered to opt out, although it is good practice for doctors to ask relatives for their agreement at the time of death.

England seems, therefore, to have excluded a ‘hard’ opt-out system where doctors can remove organs from every adult who dies unless the person belongs to a group that has been defined in law as being against an opt-out system. This has been confirmed by the Parliament Under-Secretary of State for Health, Jackie Doyle-Price, who stated:

“The system that we are looking to introduce has much in common with that in Spain. The issue is not so much about the register moving towards an opt-out system, but the wraparound care that goes with it, such as the specialist nurses who speak with relatives when they are going through the trauma of losing a loved one, and the public debate that raises awareness. Taken together, they are what will lead to more organs becoming available.”

The bill has achieved support across political parties, with a series of touching speeches by several MPs including Labour’s Julie Elliott, whose daughter is currently on dialysis for a chronic kidney disease, and Tory backbencher Dame Cheryl Gillan, who said she had changed her mind on the issue after seeing a friend’s son struggle with a chronic liver disease.

However, there are concerns about the new legislation. The Nuffield Council on Bioethics (NCB) has argued that the proposed law may undermine public trust and, in turn, discourage organ donation. The NCB used data from Wales to show how the opt-out system has not increased organ donation so far, while organ transplant has decreased from 214 to 187 between 2015/16 and 2016/17. Experts have suggested that without clear evidence, ministers should focus on more effective factors such as training nurses to discuss donation and raising public awareness.

Costanza M is a final-year law with criminology student at London South Bank University. Her interests include politics, international affairs, national security and human rights.