If you live in Wales there will now be a presumption that you are willing for your organs to be donated, unless you explicitly opt out of the scheme.
John Bingham reports on the recent legislation:
The “opt-out” system means organs could be taken from a person who has died unless they or their loved-ones actively object. It would mean that the current voluntary scheme, in which people carry Donor Cards or register their consent online, would no longer operate nationwide. Under the plans, organs taken from bodies in Wales could also be used in other parts of the country where active consent is still required…
The presumed consent system could come into force by 2015. The new consent law would apply to over-18s who die in Wales if they have lived in Wales for more than 12 months. Organs made available under the system would be the same as the “opt-in” method – including kidneys, heart, liver, lungs and pancreas – and would not only go to donor patients in Wales. They could go anywhere in the UK.
Dr Peter Saunders, chief executive of the Christian Medical said the change was “unnecessary and unethical”. He is good for a soundbite:
We strongly support organ donation but so-called presumed consent involves neither consent nor donation – it is neither voluntary nor informed and involves taking organs rather than giving them.
It means effectively that the state will be able to overrule families and there is a very real danger that it could also prove counterproductive and undermine trust leading to fewer rather than more donations.
The Anscombe Bioethics Centre submitted evidence against the new legislation. You can read their report here. The main objection is that it turns a gift into an act of theft.
Here are the main points from their report:
THE CATHOLIC VIEW OF ORGAN DONATION: ORGAN DONATION AS A PROFOUND ACT OF HUMAN SOLIDARITY
0.2 This response will first outline a Roman Catholic understanding of organ donation, and how this coheres with a true humanism and helps to reinforce positive attitudes of solidarity within society. It will then turn (in paragraphs 1.1 and following) to the consultation questions.
0.3 Organ transplantation from the dead saves and transforms lives. It offers hope for those with diseases that would otherwise be untreatable, or treatable only by ongoing, imperfect means such as kidney dialysis. Transplantation is, in principle, welcomed by the Catholic Church.
0.4 When solid organ transplants were first being attempted in the 1950s, Pope Pius XII explained to Catholics that this was “not a violation of the reverence due to the dead”. Rather, it was justified because of “the merciful charity shown to some suffering brothers and sisters.” More recently Pope John Paul II said that, “We should rejoice that medicine, in its service of life, has found in organ transplantation a new way of serving humanity”. Far from opposing the use of the dead body in the service of medicine, the Church actively encourages Catholics to offer their organs after death. The Catechism of the Catholic Church states that “Organ donation after death is a noble and meritorious act and is to be encouraged as a expression of generous solidarity”.
THE NEED FOR CONSENT
0.5 While encouraging Catholics to donate organs, Pope John Paul II emphasised that what justifies the use of the human body is the free act of donation. “Above all, this form of treatment is inseparable from a human act of donation. In effect, transplantation presupposes a prior, explicit, free and conscious decision on the part of the donor or of someone who legitimately represents the donor, generally the closest relatives. It is a decision to offer, without reward, a part of one’s own body for the health and well-being of another person. In this sense, the medical action of transplantation makes possible the donor’s act of self-giving, that sincere gift of self which expresses our constitutive calling to love and communion.”
0.6 If the organs are taken without the consent of the donor, or that of the relatives speaking on behalf of the donor, then this is not an act of “donation”. It is taking without asking. The words of Pope John Paul II regarding donation without consent are very clear: “In such a perspective, organ transplantation and the grafting of tissue would no longer correspond to an act of donation but would amount to the dispossession or plundering of a body.”
0.7 For this reason the Catechism says that organ donation “is not morally acceptable if the donor or his proxy has not given explicit consent.” It is not morally acceptable because it fails to respect the human meaning of the human remains. Instead of donation being an expression of solidarity between people, it becomes a violation of the dead.
THE BENEFITS OF A SYSTEM OF TRUE DONATION
0.8 It should not be assumed that undermining the principle of consent will in fact increase the availability of organs. A look at the history of medicine shows that for many centuries there was a stigma attached to dissection. Bodies were taken from the poor and criminals who died in prison, and so people did not want the bodies of their loved-ones handed over to the surgeons. The consequence was a shortage of dead bodies, and this shortage gave rise to widespread grave robbing. This reached a peak in the early nineteenth century when the price for fresh dead bodies induced Burke and Hare to turn from grave robbing to murder. It was in reaction to this that, beginning with the Anatomy Act 1832, there was a concerted attempt to encourage voluntary donation and to remove the stigma associated with dissection.
0.9 The principle of voluntary donation has remedied a problem which had dogged medicine for centuries. The success of voluntary schemes should not be underestimated. According to UK Transplant a total of 17,761,585 people or 28% of the entire population have joined the NHS Organ Donor Register. There are other countries which have still higher numbers of people on the organ donor register. Currently it is not clear whether people are given adequate information prior to signing the ODR, and thus whether it constitutes effective consent. Nevertheless, the success of efforts directed at increasing voluntary participation should be acknowledged as should the ethical importance of personal involvement when the decision pertains to one’s own remains: no decision about me without me. Thus, subject to adequate information, sensitivity to relatives of the dying, and other ethical constraints, it is “opting in” for organ donation that should be encouraged.
0.10 In contrast, consider the reaction to the Alder Hey scandal and the sight of parents forced to bury parts of their children in three or four ceremonies. This dramatically weakened public trust in the collection and storage of body parts. The same kind of scandal could happen with organ donation if consent is not respected.
0.11 A system of donation, in which people explicitly give permission for their organs to be used after their death, allows the human body to be used while respecting the dead. It is also helps to reinforce positive attitudes of solidarity within society. This is what Pope John Paul II meant when he talked of organ donation as part of the culture of life. An “opt out” or “presumed consent” system of organ donation undermines the principle of consent and effectively, even if not intentionally, violates the reverence due to a dead body. Even in pragmatic terms, there is a serious danger that it would harm transplant medicine because it would erode public support for organ transplantation.
An earlier paper from 2002 raises deeper issues about the ambiguity of brain death and the necessity of explicit consent in order ‘to protect the interests of the donor in avoiding premature retrieval of organs’. In other words, the unintended consequences, the risks, could far outweigh the presumed benefits. [The Linacre Centre later became the Anscombe Bioethics Centre]
The Linacre Centre’s own view is that `brain death’ protocols are insufficient for establishing the death of the body: we have become increasingly convinced by evidence suggesting that integrated bodily activity can continue after `brain death’ has been diagnosed. There have been documented cases of `brain dead’ patients maintaining bodily functions for months or even years: pregnant women have gone through pregnancy, children have grown up and passed through puberty, etc. 3Moreover, it is well-known to transplant teams that heartbeating donors move when organs are taken, unless they are paralysed by drugs, and that their blood pressure goes up when the incision is made. It is worth noting that some anaesthetists recommend that the supposed `cadaver’ be anaesthetised when his/her organs are retrieved. Most organ donors are unaware that their hearts may be beating when their organs are taken, and that they may be pink, warm, able to heal wounds, fight infections, respond to stimuli, etc.
We would urge that while the adequacy of brain-related criteria for diagnosing death is fully and fairly investigated, the retrieval of organs from heartbeating donors should be put on hold. Donations from non-heartbeating donors – perhaps after organs have been cooled to preserve them – could continue while this investigation was carried out. At the very least, those who wish to donate their organs should be given the option of being non-heartbeating donors only, and should be fully informed of the state their bodies will be in when their organs are retrieved. Such information requires a proper interview with a medical practitioner who can explain current controversies: simply signing a donor card in no way indicates that the prospective donor understands what organ donation will involve.
In view of the uncertainties surrounding diagnosis of death, it is all the more important that an `opt out’ system of organ donation be firmly excluded. We welcome the emphasis placed on consent in Human Bodies, Human Choices. Explicit consent by the donor, in addition to consent (or non-objection) by relatives is needed both to safeguard respect for the body, and to protect the interests of the donor in avoiding premature retrieval of organs. We would urge that even if the donor had given fully informed consent to organ donation, objections raised by relatives should be seen as overriding. This is particularly the case with retrieval of organs from heartbeating donors, which can be most distressing for relatives who believe – not without evidence – that their loved one may still be alive.
In the case of non-heartbeating cadavers, we would require consent from the donor him/herself, while relatives should be kept informed and could veto the procedure if they raise strong objections. In the case of children, however, parental consent should be both necessary and sufficient for the retrieval of organs from a non-heartbeating cadaver. Parental consent should also be necessary and sufficient in the case of stillbirth or miscarriage, at whatever stage of pregnancy. Wherever practicable the consent of both parents should be obtained, as generally both will have a legitimate concern for the child, though this will depend on the circumstances of the relationship, contact and custody. However, the deliberate termination of pregnancy and the destruction of human embryos are serious acts of injustice against the child in which the parent or parents are complicit. The use of the body of a child whose life is taken in this way adds insult to injury and is wholly unacceptable.