Proposals to encourage more organ donation in Scotland could lead to an Alder Hey-style scandal – which saw the unauthorised harvesting of body parts – medical ethics experts will warn this week.
The Scottish Council on Human Bioethics (SCHB) will issue its warning at Holyrood when MSPs consider plans to change the protocols that doctors use when claiming organs for transplant operations.
The Scottish Parliament is examining the Transplantation (Removal of Organs etc) Scotland Bill – which would see the country move from the current “opt in” system to an “opt out” system for organ donation.
Under an “opt in” system, organs can only be taken if the deceased has registered a desire that their body parts should be used to help others.
An “opt out” system enables healthcare professionals to remove organs for donation unless the deceased person registered an objection during his or her lifetime.
The proposed legislation, which has been put forward in a Member’s Bill drafted by Labour MSP Anne McTaggart, recommends a variation of the so-called “soft opt-out” option. This would require relatives to give authorisation before organs are removed.
However, under McTaggart’s plans, people would also be able to nominate a proxy, who could make a consent decision on their behalf.
There would also be a mechanism to authorise the removal of body parts even when there was no express authorisation from family or a proxy.
With Scotland suffering from a shortage of organ donors, the British Medical Association and the British Heart Foundation have both supported the proposals, which they have argued will save lives.
However, when it gives evidence to Holyrood’s health committee on Tuesday, the SCHB will express strong opposition to the introduction of an “opt out” system.
The charity, which describes itself as an “independent, non-partisan, non-religious” organisation, will draw comparisons with the Alder Hey scandal.
There was an outcry when it emerged at an inquiry in 1999 that Alder Hey Hospital in Liverpool, and other institutions, had without authorisation removed, retained, and disposed of human tissue and organs – including from children – between 1988 and 1995.
A paper from the SCHB ahead of Tuesday’s meeting says: “The SCHB is extremely concerned about the potential for serious mistakes resulting from the possibility of a closest relative authorising the removal of body parts from a deceased person who has not left any specific expression of wishes. This is because there is no certainty that the decisions of a closest relative are a true reflection of the wishes of the person at the time of death.”
It goes on to say: “To go beyond the express and specific wishes of a person by letting others make important decisions on what they ‘assume’ or ‘presume’ are the wishes of this person is what specifically led to the scandal at Alder Hey Children’s Hospital in Liverpool in the 1990s.
“At this hospital, body parts of children were retained after post-mortem examination when healthcare professionals ‘presumed’ that this would be acceptable to parents without consultation.”
Although the proposed legislation applies to adults, Dr Callum MacKellar yesterday said the SCHB was concerned the legislation could open the door to a similar scandal whereby organs would be routinely removed regardless of whether permission had been obtained.
In particular, the SCHB has concerns about the bill’s plan to give people the power to appoint a proxy to make a decision about authorisation, or to register in advance an objection to organ removal.
In its paper, the SCHB claimed it was “aware of a case where just a landlord of a deceased person in Scotland was asked to authorise the removal of organs for transplantation”.
The SCHB also objects to plans to create “Authorised Investigating Persons” – health professionals whose role would be to determine whether a deceased adult’s organs could lawfully be removed and used for transplantation. The Bill only requires the Authorised Investigating Person to take account of the views of any relative he or she can consult, using “best endeavours” within a “reasonable time”.
MacKellar said: “Instead of having to get the nearest relative, all that has to be done is that the Authorised Investigating Person states that they have not had access to the relatives or proxy and they – an NHS person – authorises the use of organs.”
He added: “If you have another scandal, it undermines the whole system because even less people are prepared to donate organs. We have to make sure all this legislation is scandal-proof so that people have confidence in the system and are prepared to donate organs more readily.”
But the BMA said those who did not want to donate would be protected. A spokeswoman said: “The BMA has long been a supporter of a move to an opt out system of organ donation, not only because we believe that it would have a positive effect on donation rates, but also because it gives added protection to those who do not wish to donate and makes it more likely that those who are willing to donate will be able to do so.
“There has been welcome progress in the number of people signing up to the Organ Donor Register and donation rates, but despite this rise, there are still people in Scotland waiting for an organ transplant. Some of these people will die while they are waiting, while others will have died without even reaching the list.”
She added: “We believe that more can be done and more lives can be saved.”