Organs at any price? Gestating for donating
Is transplantation medicine losing its way? Organ transplantation has been one of the great medical advances during the past half-century or so. However there have been several episodes of public loss of confidence in organ donation during that time. After the notorious Wada heart transplant scandal, heart transplants in Japan virtually ceased for decades and the case of Sim Tee Hua in Singapore is part of the reason that donation rates remain low there. These scandals have all involved adult patients -- up to now.
New questions arose for me however about the ethics of organ donation from a paper given by a paediatric intensivist at London’s Great Ormond Street Hospital at a recent conference in Glasgow. Dr Joe Brierley, who has tirelessly campaigned to increase the availability of organs for children, stated in the Daily Mail that “Given that three people a day die waiting for an organ transplant, I welcome anything that improves the number of donors.”
His general enthusiasm to increase available organs is understandable. However the particular idea that Dr Brierley is now advocating is that women carrying babies identified on antenatal screening to have lethal abnormalities such as anencephaly, should be asked if they would allow organs to be taken from the baby for transplantation after birth should they choose to continue with the pregnancy.
From a utilitarian perspective this makes perfect sense – these children have hopeless prognoses and will die anyway so why let their organs simply go to waste? Though exact details of the proposal are unclear there are enough elements in what has been reported to raise some serious questions.
We are told for example in the report that anencephaly gives babies “no chance of survival” yet later informed that of the 230 babies with the condition a dozen are born alive if the mothers choose not to abort them. In fact around 5 percent of anencephalic newborns will live for 6 days or more and an internet search easily will reveal pictures and stories of several of them and their families celebrating their first birthday.
If mothers have been encouraged to consent to organ donation from their babies after birth, how will the infants be treated if they do not die soon after birth? If the desire to welcome anything that increases organ donation becomes too great, the temptation not to do everything to give these babies the chance of life for themselves must be present even if not given into.
And once the mother has actually seen her child there is the possibility that she may change her mind about having the organs removed. How will this be handled if the principal reason that she has been encouraged to continue the pregnancy has been to save the lives of others?
Dr Brierley states that “We are seeing more women saying, 'I don't think it is right to terminate.' It is then a case of them having conversations with NHS staff about the options”. This is very interesting since most women report coming under considerable pressure to have an abortion when severe fetal abnormalities are detected and anecdotally report being discriminated against if they go to term in such circumstances.
To suggest continuing with a pregnancy in such circumstances has been previously regarded as cruel and imposing unnecessary suffering upon the mother. Does abortion in such circumstance suddenly become the worst thing to do now that the baby’s organs can be used to save others? If so, why was it the best thing to do previously?
If parents choose not to abort because they will love their child for as long as it lives with whatever abnormalities it has then I can see no ethical objection to a request being made for consideration of organ donation when the child dies. There is however a very fine line between continuing to term and donating organs if and when the child dies and continuing with the pregnancy solely in order to have the organs harvested.
The diagnosis of brain death can be difficult enough in adults let alone in anencephalic children. In cases where doctors have attempted to treat those nearly dead “as good as dead” predictable loss of confidence in transplantation has followed. Organ donation rates rose dramatically at the Royal Devon and Exeter Hospital between 1988 and 1994 when the controversial practice was instituted of “non-therapeutic ventilation” of patients who were not brain dead but were thought to have a hopeless prognosis from intracranial bleeds.
The Department of Health however abruptly stopped the practice in 1994 advising that “in cases where the clinician’s intention in referring the patient to intensive care is not for the patient’s own benefit but is to ensure his or her organs can be retrieved for transplantation, the practice would be unlawful”.
The probability of similarly unlawful processes being repeated seems to me quite high here and careful and full informed consent is crucial if the whole endeavour is not to backfire as it did in Devon.
Dr Trevor Stammers is Programme Director in Bioethics and Medical Law at St Mary’s University College, London, and editor of a journal, The New Bioethics.
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