Legislation badly needed to regulate organ retention and transplants

Change is required so that patients, relatives and doctors know where they stand, writes Dr Simon Mills

Change is required so that patients, relatives and doctors know where they stand, writes Dr Simon Mills

The confession by more than a dozen Irish hospitals that they provided pituitary glands to a pharmaceutical company for the manufacture of growth hormone is a salutary footnote to the "organ-retention scandal" that first surfaced in 2000. The organ-retention controversy is entering its endgame phase.

The practice of retaining organs without consent has surely ceased; the Dunne inquiry is belatedly preparing its first report; the first parental legal case claiming compensation for mental trauma made its way - albeit unsuccessfully - to the High Court last month.

It is arguable that the pituitary gland revelations are somewhat different from other organ-retention incidents. Ethically speaking, a distinction might be drawn between the retention of an organ for a beneficial purpose and the retention of an organ with no reasonable clinical objective. Possibly, retaining a pituitary gland to make growth hormone for other children is less morally blameworthy than retaining organs for no bona fide purpose, such as most markedly happened in Alder Hey hospital in England.

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But even if this distinction could be made logically, it is a logic that trips over two hurdles.

The first is that it fails to take account of the importance of consent, and particularly authorisation for organ removal from grieving parents, who understandably wish to continue to offer their child in death what protection they can.

Even if making growth hormone is a laudable aim, it is one fatally undermined by a deception.

A second defect is that engaging in such justification is retrospective rather than constructive. At this stage, we should be examining not merely what happened (the task being undertaken by the Dunne inquiry), but critically, what should happen now?

One requisite change, already under way, is in the culture of medicine. A pragmatic defender of medicine's historical reticence when it came to organ-retention might point to two things.

One is the undeniable difficulty of talking with heartbroken relatives. A second consideration is the perception that little - if any - harm is done by retaining the now-redundant organs of a deceased patient.

Neither is especially defensible. If doctors find it difficult to talk with grieving family members, they should be trained to do so. Bereavement counsellors can do it, why not doctors?

The second argument (that little harm is done) may have a certain appeal from a purely rational perspective: an organ buried with a patient will inevitably decompose; should it not be put to some use?

Yet such an argument fails to take account of the fact that death generally does not prompt rational, humanist disinterest.

The second change required is the enactment of a law which will allow doctors, patients who may be contemplating organ donation and bereaved relatives to know where they stand.

Although the eyes of the country are currently focused on the issue of children's organs being passed on to pharmaceutical companies, other issues involved include autopsies to establish cause of death, organ-retention for research and organ-transplantation.

Ireland has no modern legislation governing the post-mortem use of organs. Britain has a somewhat ambiguous law in the form of the Human Tissue Act 1961. While recent organ-retention inquiries in Britain have called for the overhauling of the Act, at least legislation does exist there.

What might equivalent legislation in Ireland include? It would surely enshrine the principle of authorisation. Clearly, it is ethically and pragmatically preferable that doctors have some form of authorisation before they set about removing organs for retention, research or transplantation. In the case of children, that authorisation would come from parents; in the case of adults, they are competent to decide for themselves.

But to decide what? This is one crux that any mooted Irish legislation will have to face.

Should legislation on human organs automatically presume, for example, that people consent to donate their organs for transplantation?

Many writers advocate that while an "opt-in" approach (meaning that people decide to "opt in" to donating) should be taken to organ donation for medical research, teaching or industry purposes, the opposite should apply to human organs for transplantation.

In opinion polls, many people seem strongly disposed to the idea that after death, their organs should be used to help others, yet this does not translate into high levels of organ donation. Some people change their minds, but others never get around to acquiring donor cards or never tell their relatives of their intentions.

Even where an intention to donate is communicated to family members, they will sometimes override that wish and doctors - in the absence of guidance and in the present climate - may be loath to go against family wishes.

For Irish legislation to take an "opt-out" approach to organ donation for transplantation would give force to the wish expressed by many people to help others after their deaths.

Much of the numerical mismatch between those requiring transplants and the comparatively small quantity of available organs could also be eliminated. Those who object to donating would be free to "opt out" and the process for doing so would have to be simple, transparent, and readily available.

Yet, whatever its form, legislation which makes clear the ground on which patients, family members and doctors stand when it comes to the treatment of organs after death, is desperately required. In the traumatic aftermath of a death, it does not help anyone that trust is fractured and that confusion threatens to reign.

Simon Mills is a barrister, a GP and the author of Clinical Practice and the Law (Butterworths)