William Rees-Mogg
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This is the story of a grandmother, a mother and a granddaughter. The grandmother, Rachel Leake, is 39 years old. She suffers from a kidney condition, which requires a transplant. The daughter, Laura Ashworth, 21, died recently in the intensive care unit of Bradford Royal Infirmary, after an acute attack of asthma. The granddaughter, Macie, aged 2, lived with her mother and grandmother in a farmhouse near Bradford; she is now being cared for by her sick grandmother.
Before the daughter's fatal illness, Mrs Leake's sister had offered to provide a kidney as a living donor, and that arrangement may still go ahead. However, Laura Ashworth had told her mother that she wanted to help her if the time came. There is apparently no dispute about the daughter's wishes. Apart from anything else, if anything happened to the daughter it was the grandmother who was going to look after the child.
When Laura Ashworth died, her body parts were removed and used as transplants. Despite her known wishes, the kidneys were not given to her mother; one went to a man in Sheffield and the other to a man in London. Mrs Leake remains on the waiting list for a kidney.
And the decision on allocation was taken by the Human Tissue Authority, which decided that the mother was not to receive her daughter's kidneys after her death.
The daughter had, in fact, joined the NHS Organ Donor Register, but she had not formally recorded her wish to donate to her mother, though she had expressed that wish to her mother and to other people. In her last day in intensive care she was unconscious.
The decision on allocation was taken by Adrian McNeil, the chief executive of the Human Tissue Authority. He told The Times that he did not wish to comment on individual cases. However, he argued that the authority was holding an ethical review of its policy, and while the review was in progress similar requests should be turned down as a matter of course.
The body that actually administers the Organ Donor Register is UK Transplant. It has offered its condolences to Miss Ashworth's family - which must have been a great comfort - and its spokesman went on to make a crass observation that it should not be possible for anyone to “jump the queue” to receive a donation.
Inevitably, time is involved in all transplants. Nevertheless, the family put their case. In an ordinary matter they could have gone to court to ask for the daughter's last wishes to be respected. They did go to their Member of Parliament, Gerry Sutcliffe, and Mr Sutcliffe took the case to health ministers. The family also spoke to the transplant co-ordinator, who was in tears. She tried to get her bosses to agree to the transplant going straight to the grandmother. They would not shift from their refusal.
Although Mr McNeil accepts that the authority has the power to allow specific requests from donors, he personally and repeatedly refused to allow the daughter's request. The only reason he has given is that such a decision cannot be made until the ethical review committee has reported, a purely bureaucratic reason. The daughter's wishes have to be refused because they are not on the agenda.
It is a great pity that there was no time for the issue to be taken to court. There seems to be no doubt that, in English law, the daughter could have chosen the beneficiary of her donation so long as she was alive. Most living donors do, in fact, give organs to help people with whom they have a close connection. In law, we all own our own organs so long as we are alive.
Apparently the Human Tissue Authority effectively nationalises our organs if we consent to their use after our death. It does have the authority to follow our wishes if we want our organs to go to someone we love, but it feels free to override our wishes and give them to someone else. A judge may have upheld the Tissue Authority's view of the law, or he may have held that their use of their discretion was unreasonable. There was not time to test the question.
I was surprised that Mr McNeil referred only to the need to wait for the ethical review. Organ transplants are also under active consideration in Brussels.
In May of last year the Commission of the EU published a staff working document under Article 152 of the Amsterdam Treaty. The paper calls for “An appropriate and flexible European legal framework... under community binding legislation”.
Any legislation that may be adopted would come under qualified majority voting. Mr McNeil must be conscious of the impending European regulation.
Certainly, the European Working Document highlights some of the issues in this tragic case. There is a paragraph that calls for “maximising organ procurement” under “deceased donor management”.
The document discusses the organ shortage - a real medical problem. There are growing waiting lists; there is increased demand; there is a limited donor pool.
Miss Ashworth's kidneys could have been regarded as a scarce European resource.
Perhaps the key paragraph is the one that states: “Organ transplants are subject to time pressure. The process from the procurement to the transplantation should be done in a few hours in order to preserve the organ's viability. As part of this administration, an effective allocation system is essential.”
Apparently, the grandmother's need did not fit into the “effective allocation system”.
Both the European Commission and the Human Tissue Authority should remember the working document warning: “Any ethically doubtful activity would undermine the trust of the population in the donor transplantation process. A loss of trust can seriously lower the donation rates.”
Refusing to honour a daughter's dying wish to help her mother is an “ethically doubtful activity”.
William Rees-Mogg has had a distinguished career with The Times and The Sunday Times. He was Deputy Editor of The Sunday Times before becoming Editor of The Times in 1967, a position he held until 1981. He was made a life peer in 1988. Since 1992 he has been a columnist for The Times, writing on a variety of issues. He has also been chairman of the Broadcast Standards Council and British Arts Council
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