In a recent Medical Protection survey almost a third of doctors questioned were not comfortable discussing organ donation with a patient. With different organ donation laws across the UK and further changes imminent, this is maybe not surprising
An ageing population and an increase in chronic diseases such as diabetes means the number of individuals on transplant waiting lists continues to rise. In the UK, 6,060 patients were waiting for a transplant at the end of April 2019.[1] Currently three people a day die in need of a transplant. The fundamental problem is that there are simply not enough suitable organs available for these life-saving procedures, due to a shortage of people willing to donate their organs. [2]
What is presumed consent?
Presumed consent is also known as an opt-out system and means that unless the deceased has expressed a wish in life not to be an organ donor then consent will be assumed.
What has changed and where?
Currently, in England, Scotland and Northern Ireland, with respect to transplantation from a deceased donor, consent can be given by an individual whilst alive, or by an appropriate representative of the deceased after death. However, the laws on consent for organ donation differ around the UK. Here we provide a summary of the legislation in each country.
Wales: Human Transplantation (Wales) Act 2013
Until December 2015, all parts of the UK had an ‘opt-in’ system for transplantation. However Wales became the first UK nation to operate an ‘opt-out’ or ‘deemed’ consent model for deceased organ transplantation. Where an individual has not expressed an objection to organ donation whilst alive, their consent for organ donation is assumed. This applies to all adults over 18 who have been resident in Wales for over 12 months and who die in Wales. The legislation does not apply to anyone living in Wales temporarily and both prisoners and members of the armed services required to reside in Wales are exempt.
Wales operates a ‘soft opt-out’ model, which means that family members are approached after an individual dies and given the opportunity to indicate whether they are aware that the deceased had any objection to organ donation. Donation will not proceed if the family believe the individual would have objected.
In 2017/8 Wales had a consent rate of 70%, which was the highest rate in the UK, and the highest number of donors ever seen. The ‘soft opt-out’ system has meant 46% of the population have registered their organ donation decision, with 40% registering yes to donate. [3]
England: Max and Kiera’s law
The Organ Donation Act became law in England on 15 March 2019 and will take effect in spring 2020. The new law means adults in England should be considered to be potential organ donors unless they have chosen to opt-out of the system. The Government plans to launch a public awareness campaign of the new law, which is named after a young girl (Keira) who donated her organs and the young boy (Max) who received her heart.
There will be strict safeguards in place and anyone not wishing to donate their organs will continue to be able to record this on the NHS Organ Donation Register. [4] Children under 18, people who lack mental capacity and people who have not lived in England for at least 12 months before their death will be excluded from presumed organ donation. The Department of Health and Social Care opened a consultation in April 2019 for views on what parts of the body should be excluded from the new system. The consultation closes in July 2019.[5]
Scotland: Human Tissue (Authorisation) Act 2019
Scotland has recently introduced new laws on consent for organ donation. The new legislation comes into effect in Autumn 2020 and will introduce an opt-out system of organ and tissue donation.
The Bill amends the existing Scottish legislation that supports donation by introducing a new, additional form of authorisation called ‘deemed authorisation’. This means that donation may proceed where a person was not known to have any objection to donation.
The Bill includes safeguards to ensure that donation will not go ahead where it would be against the person’s wishes. [6] Under the system, there will be protections for adults who lack capacity to understand deemed authorisation, adults resident in Scotland for less than 12 months and children under 16 who will not be subject to deemed authorisation.
Northern Ireland: An opt-in system
The new laws around organ donation have already taken effect in Wales, with England and Scotland following suit next year, but Northern Ireland will not be adopting it. In Northern Ireland the current legislation requires individuals to opt-in to organ and tissue donation via the NHS Organ Donor Register. In 2016 the Northern Ireland Assembly decided not to make any changes to the current process of consent for organ donation. [7]
Further resources
References
[1] https://www.organdonation.nhs.uk/helping-you-to-decide/about-organ-donation/statistics-about-organ-donation/
[2] https://www.organdonation.nhs.uk/get-involved/organ-donation-campaigns/]
[3] https://gov.wales/sites/default/files/publications/2018-12/organ-donation-annual-report-2018.pdf
[4] https://www.gov.uk/government/news/opt-out-organ-donation-max-and-keira-s-bill-passed-into-law
[5] https://consultations.dh.gov.uk/organ-donation/ae39c4b9/
[6] https://www.organdonation.nhs.uk/uk-laws/organ-donation-law-in-scotland/
[7] https://www.organdonation.nhs.uk/uk-laws/organ-donation-law-in-northern-ireland/