Philippa Taylor

Opt in or opt out for organ donation? Pressure grows for change

Philippa Taylor was Head of Public Policy at CMF until September 2019 and now works with CARE. She has an MA in Bioethics from St Mary’s University College and a background in policy work on bioethics and family issues.
The views expressed do not necessarily reflect those of CMF.

There have been growing demands this week for the introduction of a system of organ donation across the UK in which everyone is automatically placed on the organ donor register.  This would mean that, unless people specifically opted out, hospitals would be allowed to use their organs for transplants on their death.

Monday saw the launch of a White Paper in the Welsh Assembly that would introduce a ‘soft’ opt-out system of organ donation system in Wales. The soft opt-out system (also known as ‘presumed consent’) is one in which the removal and use of organs and tissues after death is permissible unless the deceased objected during his or her lifetime. After death relatives will be involved in the decision making process around donation.  Our website has more details on this, as does this blog.

In Scotland, Glasgow Evening Times has launched a campaign to persuade the Scottish Government to launch an opt-out system of organ donation. This campaign has been endorsed by a motion in the Scottish Parliament proposed by Humza Yousaf, an SNP MSP, which now has 23 signatures. It ‘recognises the growing calls for Scotland to have an opt out organ donation system; endorses the Evening Times campaign, Opt For Life, which calls for a presumed consent system in Scotland; believes that this will greatly increase the availability of donor organs…’

Not to be outdone, a debate on Tuesday in the Westminster Parliament on organ donation, had several MPs call for an increase donation rates in the UK through opt-out measures.  And, much like in Scotland, an Early Day Motion in the Westminster Parliament calls for an opt out system to be introduced across the UK. However this only has 20 MPs supporting it thus far, out of 650 MPs in the House of Commons.

In many ways, it is the success of transplantation surgery and advances in technology that have led to current challenges of unmet need for transplant and to waiting lists for organs.  As The Minister of State for Health, Paul Burstow, said in the Westminster debate, some 10,000 individuals now require a transplant. People are living longer, sometimes with multiple medical co-morbidities, which means that more people will need transplants. The problem is becoming an increasing challenge for health care providers and the Government.

Spain is often held up as a model to follow, with presumed consent legislation and high donation rates.But this should not be assumed to be a causal connection because the threefold increase in organ donation in Spain occurred without changing the law. Despite the enactment of an opt-out scheme in 1979, a significant transformation in the level of donations took place ten years later, only after investment in infrastructure in 1989. Moreover, Alun Cairns MPstated during the Westminster debate that some of his former colleagues in the Welsh Assembly visited Spain, going there in favour of ‘presumed consent’ at the outset, but they had changed their minds by the time they came back.

In the UK, despite no presumed consent legisalation, there has been an increase in the number of organ donors by around 28% since 2008, and we are on track to meet the 50% improvement by 2013 set by the organ donation taskforce in 2008.  This is because there are many factors besides legislation which affect donor rates. These include public awareness, religion, cultural attitudes to donation, hospital processes, provision of intensive care beds and numbers of road deaths, to name a few. In Spain, an important factor is ensuring that the relatives of potential organ donors are always approached by someone specifically trained for the purpose. In the UK one measure already introduced to increase donation rates is through the driving licence application.  Now, everyone who applies for a driving licence online has to answer questions about organ donation before being able to complete their application. The aim is to get people thinking about organ donation and increase the number of people on the organ donor register.

These are practical issues. Presumed consent also generates ethical issues. A CMF blog and a CMF submission to the House of Commons Welsh Affairs Committee on organ donation set out our views on an opt-out system or ‘presumed consent’, and our ethical and practical concerns with it, particularly around the issue of consent. In short, while we consider that there is little convincing evidence that presumed consent legislation would make a difference in the UK to donation rates, we do know it would generate ethical concerns by assuming consent even when it has not been given.

While we welcome and encourage organ donation, it must remain an altruistic donation. If there is any element of undermining this gift, either through a hint of financial incentives or an element of felt duty, this gift principle will be undermined and it would change the nature of the exercise. As Paul Burstow concluded,‘donation is a precious gift. We need more people to realise that and give such a gift by putting their name on the register and being willing to donate.’

Posted by Philippa Taylor
CMF Head of Public Policy



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