Organ donation week: 10 years on from our report on the ethics of donation, what has changed?

Our report was centred around two big questions:

• How far should society go in trying to encourage people to donate their bodily material? For example, is it acceptable to offer people money?
• What is the role of the government and others in responding to the demand for bodily material? For example, how can barriers to donation be removed, and how can the need for donated bodily material be reduced?

We concluded that altruism should continue to be central to ethical thinking about donation. The idea of altruistic donation – giving bodily material because another person needs it – underpins a communal and collective approach where generosity and compassion are valued.

We also concluded that allowing some form of payment in some circumstances of donation may be ethically acceptable. We put forward an ‘intervention ladder’ to help policy makers consider the ethical acceptability of various ways of encouraging people to donate, and we made a series of recommendations for individuals and for organisations. The one that really got people talking was a proposal for the NHS to trial paying the funeral expenses of those who donate their organs. 10 years on, I can still remember my phone ringing off the hook with journalists and the hectic schedule of interviews that followed. We prompted a national discussion that day and it certainly got everyone thinking about altruism and appropriate forms of reward and recompense for donors and their families (on the theme of getting people talking - see also ‘We’re all talking about ethics, whether we realise it or not’).

What has happened since?

Whilst that particular proposal did not get taken up, there has been a big change in organ donation policy in the UK in the years since we published that report: in 2019, the law changed to an opt-out system for adults in England, Wales and Scotland.

In our report, we concluded that opt-out systems could be ethical, but only if people are well informed, families are appropriately involved and supported by specialist nurses, and trust in the system is not compromised. We did not recommend a change to opt-out because of the lack of evidence that this would in itself lead to an increase in the number of organs donated.

In responding to the initial Department of Health and Social Care consultation, we expressed our concern that a move to opt-out was premature, given that evidence to date from Wales (who at the time of our report, had expressed an interest in moving to an opt-out approach) was inconclusive. We expressed this concern in media interviews and articles and through participation in various panels and events throughout the UK, working also to highlight the key factors associated with high consent rates: support for families by specialist nurses, and families knowing what the deceased person wanted in terms of organ donation.

The Organ Donation (Deemed Consent) Bill was introduced to Parliament in February 2018. From the earliest stages of the Bill we worked to brief key members of Parliament. We focussed firstly on making our concerns about the lack of evidence known, and later to encourage clear commitments from Health Ministers to invest in infrastructure and systems that we consider essential to ensuring that opt-out is introduced in an ethical way. The key factors we think are needed to ensure that an opt-out system for organ donation can proceed ethically are:

• Measures that encourage people to express and document their wishes about organ donation during their lifetime – for example, through sustained public awareness campaigns
• Appropriate support for families to remain central to the organ donation process
• Adequate infrastructure in place to support the organ donation process, including further investment in specialist nurses given their proven value both in supporting bereaved families and in enabling others to benefit from the gift of organ donation.

In the later stages of the Bill as it passed through the House of Lords, Baroness Deech argued our case eloquently, saying:

The Nuffield Council, accepting the situation as it is in this Bill, emphasises how it can be made to work ethically. It says, “it is vital to have measures in place that encourage people to express and document their wishes about organ donation during their lifetime”. The Nuffield Council further says that, “information about the donation process must be easily accessible”. It is not enough to have a publicity campaign when this Bill is passed. It needs to be maintained on an ongoing basis so that those who might donate, but are not thinking about it now, are as aware in the future as those who benefit from the publicity that will no doubt accompany this Bill’s success.”

Now, 18 months later, it is good to see examples of this happening in the media. We hope that organ donation week 2021, and every one in future, will help to support and sustain awareness of the law on organ donation and how important it is for people to talk about their wishes.

Find out more about organ donation week here: https://www.organdonation.nhs.uk/get-involved/news/organ-donation-week-2021/