England’s upcoming ‘opt-out’ organ donation scheme will not include a deceased person’s genitals, brain or face, Government documents reveal.
From next year, everyone who lives in England and is over 18 will be automatically enrolled to donate their organs when they die unless they choose to ‘opt out’.
However, this will not include donations for ‘novel transplants’, like the ovaries, uterus or feet, which still require prior consent from the deceased.
This is because ‘the public may not expect rare or novel transplants to be included in opt-out’.
The scheme was introduced under ‘Max and Keira’s Law’ to increase the number of donation procedures, with three people dying every day in England while waiting for a life-saving organ.
The law is named after a boy who received a heart transplant from a girl who donated the organ after she died in a car crash in 2017.
Although research suggests 80 per cent of people would be happy to donate their organs after they die, only 37 per cent take the time to register as donors under the existing ‘opt-in’ scheme.
Max and Keira’s Law – named after a boy who received a heart transplant from a girl who donated it – cleared the House of Commons last year. Max Johnson (left) was saved by a heart transplant given to him by nine-year-old donor Keira Ball (right) following her death in 2017
Common transplants include those of the heart, lungs or kidneys. Although considered routine procedures, only one per cent of people die in circumstances that allow for organ donation, creating a huge unmet need.
For instance, 3,500 people had their sight restored last year due to donated corneas, however, an additional 700 cases went unmet.
More than 5,100 people in England are waiting for a transplant and by the time a suitable donor is found, the patient may be too ill to receive it. In England alone, 643 people were removed from the waiting list last year for this reason.
A spokeswoman for the Department of Health and Social Care told the BBC: ‘Our priority is to improve the number of life-saving organ transplants that can take place – and we expect Max and Keira’s law, which comes into effect next year, to save hundreds of lives each year.
‘As set out in our consultation, we are proposing that the system for rare or experimental transplants – which requires express consent from relatives – remains the same under the new legislation.’
To increase the number of donors, the English Government has introduced The Organ Donation (Deemed Consent) Act 2019, which is expected to come into play from the UK’s spring next year.
Presumed consent has been in Wales since December 2015. Scotland is edging ever closer to passing the same opt-out bill and Northern Ireland is expected to follow suit.
The Act only applies to routine transplants, not ‘novel and/or rare’ ones, such as face, fingers or limb procedures.
It also excludes the use of tissues or cells as ‘starting materials’ to manipulate a patient’s DNA, which is known as Advanced Therapy Medicinal Products.
If novel transplants become standard practice and there is a high demand for them, the Government may remove them from the list of organs excluded from opt-out. However, it does not expect this to happen in the ‘near future’.
As with the existing ‘opt-in’ scheme, people on the Organ Donation Register will continue to be able to specify exactly what organs they do or not want to give under the 2019 Act.
The Act assumes all adults are willing to be organ donors, with the exception of those who ‘lack the mental capacity to understand deemed consent’ or lived in England for less than a year before their death.
Residents can also nominate a representative who will make a decision on whether they donate their organs after they die.
Even if the deceased does not elect a representative or opt out, their family members will still have the right to refuse the procedure under the new Act.
The law change was inspired by Max Johnson, 11, who was saved by a heart transplant after the organ was given to him by nine-year-old donor Keira Ball following her death in 2017.
He had spent seven months waiting for a donor heart before undergoing the nine-hour operation, which was filmed by camera crews in a UK first.
Max, of Winsford, Cheshire, suffers from cardiomyopathy, which affects his heart’s size, shape and structure.
The youngster underwent the life-saving procedure last year. Before that, he spent seven months hooked up to a pump that was keeping him alive.
Max’s father, Paul, 45, praised the law change, saying: ‘It’s been a privilege to have been involved in such a noble cause. It is a wonderful legacy for Max and Keira. It will make a difference.’
Keira died when her family’s Vauxhall Vectra hit a Ford Ranger 4×4 on the A361 in Devon. It also left her mother and brother fighting for their lives.
Her organs saved four lives in total. Max was given her heart, while a man in his 30s was given her kidney.
A woman in her 50s, who had been waiting more than nine years, was given Keira’s other kidney. Her pancreas and liver went to another little boy.
THE BOY WHO INSPIRED A CHANGE TO ENGLAND’S ORGAN DONATION LAWS
Theresa May named the opt-out law Max’s Law in honour of heart-transplant survivor Max Johnson (pictured)
Theresa May named the opt-out law Max’s Law in honour of heart-transplant survivor Max Johnson.
The then ten-year-old waited nine months for a new heart until he finally got one last August.
He was suffering from dilated cardiomyopathy, which meant he had to be kept alive by medical machinery.
His mother, Emma Johnson, has campaigned for an opt-out system to help other children.
Following surgery that left a six-inch scar on his chest, Max is doing well.
In a video message for MPs, he said: ‘Please change the law… it will save lives like mine.’
Max’s story is said to have inspired more than 1,000 people to sign up to the NHS Organ Donation Register.
His new heart was donated by car-crash victim Keira Bell, nine, who also donated her kidneys and pancreas. Mrs Johnson, 47, said: ‘Keira saved four people. We will forever be indebted.’
Max was awarded the Pride of Britain’s Child of Courage award in October because of his instrumental role in changing the law on organ donation.