Nola Leach is the chief executive of CARE (Christian Action Research and Education)
This week is Organ Donation Week 2018. It’s a chance to encourage people to register to become donors and to talk about their wishes with their families. During last year’s equivalent, 34,000 people joined the organ donation register. This is something we can all celebrate – not least because there are currently more than 6,000 people waiting for an organ transplant. The obvious demand for organs has generated public debate about how best to meet the shortfall. The Government has decided to legislate to shift England from an opt-in system of organ donation to an opt-out system (also known as presumed consent).
Although this policy seems to garner support from across the political spectrum, is it really as harmless as it is presented by much of the media and some consensus-seeking politicians? Under closer scrutiny, it is very strange that a Conservative Government should be so intent on pursuing such a statist policy. Upon closer inspection, it turns out that there are very good reasons to oppose this approach.
First, the problem in principle with presumed consent is that it develops the idea that it is acceptable for the state to presume your consent when you have not given it. Inevitably, there will be people who won’t actively opt-out of the presumed consent system, but will still not be content to donate their organs. These people may mean to do nothing, but by doing nothing they will, courtesy of presumed consent, be deemed by the state to have done something very significant.
This formalises a statist precedent with disturbing longer-term implications for the relationship between the citizen and the state. It does not sit well with the British constitutional tradition with its historic focus on liberty from Magna Carta onwards. It reflects the idea that the interests of the community should be deemed more significant than individual liberty. Surely there is something inherently contradictory about a Conservative Government pursuing this policy?
Another reason to oppose presumed consent is because the evidence from Wales (and internationally) suggests that this policy is more of a placebo than an effective means of increasing the number of organs being made available for transplantation purposes. The Welsh Government claimed that presumed consent would result in increased organ donation rates from deceased persons by approximately 25 to 30 per cent.
This has not materialised. Rather the data from Wales presents a mixed and confusing picture. In 2013/14, there were 54 deceased donors in Wales and 157 deceased donor transplants occurred. Although by 2018/19 the number of deceased donors had increased to 74, the number of deceased donor transplants had fallen to 137. Moreover, for most of the period (the first four years) after the introduction of the presumed consent system, there was only a marginal increase in the number of deceased donors (averaging 59.7), and the number of deceased donor transplants varied from year to year with 128 in 2014/15, 168 in 2015/16 and 135 in 2016/17.
Whether the increase in the number of deceased donors is owing to the introduction of the new system or to other factors is far from clear. Moreover, the fact that the number of deceased donor transplants varies so much from year to year and shows no sign of an overall upward trend casts doubt on the claimed benefits of introducing presumed consent.
A third reason to oppose presumed consent is because it entails the waste of scarce resources which could be far better spent in other ways within the NHS. In order for presumed consent to work, there needs to be regular publicity campaigns funded by the Government to ensure that the public are aware of the new system. That costs a considerable amount of money which would be better spent investing in specialist nurses. Evidence from other countries shows that where specialist organ donation nurses are employed, organ donation rates increase. Last year, the Nuffield Council on Bioethics has published research which found that the rates of family consent were 68.6 per cent when a specialist nurse in organ donation approached the family, but just 27.5 per cent when the approach was made by other staff without the specialised training.
There are three good reasons, therefore, why the Government should abandon its plans to introduce presumed consent for organ donation. First, because it institutes an alarming relationship between the state and the individual, which could have far reaching implications for basic liberties if it becomes enshrined in law and applied across the board.
Second, because there are serious doubts about its effectiveness in meeting its stated aims. It represents more of a placebo than an effective means to increase the number of organs available for donation from deceased donors.
Finally, it does not provide good value for money as there are much more effective and efficient ways to increase the numbers of organs available for transplant from deceased donors. Shifting to an opt-out system might seem attractive on paper. But such a system raises serious ethical and practical concerns. This Conservative Government would do better to leave it well alone.