12 July 2013 16:31

It’s been an eventful month for organ donation policy. First, the Welsh National Assembly passed legislation that, from 2015, will make Wales the only part of the UK to have an opt out system for deceased donors. National Transplant Week started on Monday. Then yesterday saw the publication of Taking Organ Transplantation to 2020, which sets out the UK’s latest plans for improving donation rates.

The report calls for a public debate on ‘radical actions’ to increase donation rates, including whether those on the Organ Donor Register should be given higher priority if they need an organ. Launching the report, Sally Johnson, Director of Organ Donation and Transplantation at NHSBT, said:

“We urgently need a radical change in donor and family consent. Almost everyone would take an organ if they needed one - but only 57% of families agreed to donation when they were asked.”

These developments raise many important ethical questions, including –

  • Should we all (like Wales) move from opt in to opt out?
  • What’s the proper role of families in decision-making?

The main purported advantage of opt out is that it increases the supply of organs and so saves lives. Against that, opponents argue that it undermines the idea of organ donation as a gift, that it’s fundamentally unethical to take organs without permission, and that it may erode public trust in the healthcare system, for example, if people going into hospital worry that they will be allowed to die because the system has an interest in using their organs.

In the Welsh opt out system, people will have an opportunity to opt either in or out. They can record on a register either their objections to organ donation after death (in which case their organs won’t be used), or their explicit consent (in which case their organs may be used). What makes it an opt out system is that the organs of those who haven’t registered at all may also be used (because they haven’t opted out).

One good feature of the Welsh system is that it’s still possible for people actively to consent to donate after death by registering positively and such donations will still be ‘gifts’, but supply should also be increased because the organs of people who don’t register at all may be used too. In case you’re wondering what happens when holidaymakers die in Wales, this won’t affect them because the policy only applies to adult residents of Wales who have lived there for a year or more.

The Welsh system will also allow a role for families and close friends in the decision-making process and hence it’s termed a ‘soft’ opt out system (as opposed to a ‘hard’ system in which relatives have no say). Relatives or longstanding friends won’t have a legal veto as such, but can object if they know that the deceased would have refused to donate. Ultimately, healthcare professionals must make a judgement about whether there’s sufficient information to enable a ‘reasonable person’ to conclude that the deceased would have refused.

Relatives and friends then – rightly, I would argue - do have an important information-giving role. They are often (though not always) the people best acquainted with the beliefs and values of the deceased. But what about cases where the relatives know that the deceased supported organ donation but remain unhappy about donation proceeding – perhaps because they attach emotional or spiritual significance to their loved one’s body being buried with all its parts?

Such cases are clearly going to be very difficult. On the one hand, healthcare professionals want to minimise distress to the surviving family. Against that, there are the interests of potential organ recipients to consider, as well as the desire of the deceased to become an organ donor. In addition, transplant professionals have a strong practical reason not to override families: fear of bad publicity. The transplant system, whether opt out or otherwise, ultimately depends on the willingness of people to donate (even in an opt out system people can opt out!) and so overriding very strong family objections could be counterproductive if it attracted negative publicity for the whole system.

Overall, what’s proposed for Wales is, it seems to me, ethically defensible, which is not to say that we should all follow suit immediately. Whether it has the desired positive effect on donation rates remains to be seen. Let’s hope that it does but, regardless of whether it succeeds, it will at least provide tremendously valuable evidence for policymakers in other parts of the UK and beyond.

What do you think? Share your comments with us below.

Professor Stephen Wilkinson teaches on our BA Philosophy programme.

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