“The sad thing is that all of what my family and I have gone through, and are still going through, is preventable.”
Claire Towner undergoes dialysis three times a week, has left her job and finds it increasingly difficult to spend time with her children. All for the need of a kidney.
Her sentiments are echoed by the 6889 other people in the UK currently waiting for an elusive organ. Tragically, an average of three die in vain every day.
But “preventable” this situation certainly is. And the solution is us: the public.
The more people on the Organ Donor Register (ODR), the higher the probability that a suitable match can quickly be found. Every name counts equally towards making a positive difference – though those of Black or South Asian ethnicity are in especially high demand due to lower donor rates and greater requirement in those communities.
Estimates suggest that that the ODR needs to double in size to match supply and demand. Ambitious, but achievable. How?
The most popular proposal is to turn the entire system on its head. Instead of making the decision to sign the register and thus indicate a willingness to donate, each person is assumed to be on the ODR and must actively remove themselves from the list if they so wish.
This Opt-out method (or “Presumed Consent”) was advocated by Gordon Brown in 2008 in reaction to the burgeoning queue for transplants. He wasn’t alone. Consistently, research finds that the majority of the British public are in favour of the Opt-out system – a figure that varies between 55% and 75%. Such rallying cries for an overhaul in legislation led a taskforce, including academics from the University of Southampton, to conduct a major independent inquiry into the Opt-out’s potential impact.
Their findings were both surprising and enlightening.
Acknowledging the present “desperate situation”, the taskforce went in with an open mind. But with every lawyer, religious leader, doctor, surgeon, patient, donor, sociologist and member of the public they interviewed, the case for Opt-out weakened significantly. By the end of their mammoth enquiry, the taskforce “reached a clear consensus in their recommendation that an Opt-out system should not be introduced in the UK at the present time.”
The central flaw of Presumed Consent is that it is fundamentally self-contradictory. Consent is inherently a voluntary act whereas presuming undermines that notion of a deliberate decision being made. With an issue as sensitive as organ donation, all parties – even those on the receiving end – want reassurance that the deceased intended to be a donor.
Imagine the government introducing a new law where everyone is obliged to donate fifty pounds to charity on their eighteenth birthday – exemption only being granted when requested. This would undoubtedly save lives and do great work, but it would ruin the pleasure of giving because it is forced, as well as encouraging a mentality of avoiding the donation.
Likewise, the taskforce were concerned that an Opt-out system promotes a negative environment where the public are then “facing the wrong direction” and looking for excuses. And those who do decide for personal reasons to opt out could face being socially stigmatised.
The cost of such a radical legal overhaul is also a factor to consider in the current economic climate. An estimated £45 million would be required for the necessary awareness campaign, and a similar amount would be spent on IT development. Include the “media top-up” after a few years and the risky venture has a nine-figure price tag.
It may not even be a risk that pays off. Perhaps most fascinating of all was the conclusion from the taskforce’s study of other countries which presume consent. Not all boast higher donation rates and those that do may be due to other circumstances. For instance, Spain’s dramatic increase in donors came not when the legislation was introduced but when their National Transplant Organisation was founded ten years later.
In its conclusion, the taskforce advised the government to continue with the prevailing Opt-in system for the next five years, on the condition that the campaigning was intensified. The official target was a 50% increase in after death donor numbers by 2013. Two years in and there has been some progress but millions more are needed.
For more information go to www.uktransplant.org.uk