Presumed consent for organ donation

Last year, 1000 people in the United Kingdom died while on the organ transplant list or after being removed from the list because they became too ill. Had a system of presumed consent been in place, whereby adults are automatically registered as organ donors unless they opt out, many of these deaths may have been prevented.

Over the past year, opinion in the UK among the public, media, and politicians has shifted towards presumed consent, and the prime minister has pledged his support of such a system. A public opinion poll taken in October 2007 showed that 64% of respondents were in favour of a soft system of presumed consent, compared with 59% in 2004.1

Although 90% of the UK population is in favour of organ donation, only 24% has signed the Organ Donation Register.2 Currently, when a person’s wishes are not known relatives are asked to decide about donation, in the most difficult circumstances, when they are recently bereaved. Not surprisingly, a large number of families—around 40%—opt for the default position, which is not to donate.3

The BMA has advocated a “soft system” of presumed consent since 2000. The system would still retain a role for relatives, opting out would be easy and accessible, and strict measures would be in place to protect vulnerable groups who may not have the capacity to decide for themselves.

Making donation the default position, from which everybody would retain the right to opt out during their lifetime, would make it easier for most people to achieve their wish to donate; it would also relieve relatives of the burden of making the decision.

One of the major concerns people have with a presumed consent system is that individuals will lose control over what will happen to their body after death, and the state will take over. This is not the case. Like the current system, under presumed consent people would retain the choice over whether or not to donate after death. Imperative to any change in legislation would be a widespread public information campaign, which would target sections of society that are hard to reach. Mechanisms must be in place to ensure all members of the public are informed of their choices and can register an objection quickly and easily—for example, through their general practitioner, post office, or electoral registration forms. As an added safeguard, the system would retain a role for relatives. After death, relatives would be informed that the deceased person had not opted out of donation and, unless they object—either because they know of an unregistered objection by the person or because it would cause major distress to the close relatives—the donation would proceed.

A key question is whether such a system would increase organ donation rates; a growing body of evidence indicates that it would. The relation between presumed consent and donation rates is notoriously hard to understand because of other determinants that affect donation rates. A study in 2006 compared 22 countries over 10 years; it took account of determinants that might affect donation rates, such as health expenditure and number of deaths from road crashes.4 It concluded that “When other determinants of donation rates are accounted for, presumed consent countries have roughly 25-30% higher donation rates than informed consent countries.” A study in 2003 found similar results.5

Spain consistently has the highest donor rate in Europe. One major difference between Spain and the UK is that it has an exceptionally highly organised and well funded system. The recent report of the UK Organ Donation Taskforce has drawn on the experience of Spain and has centered its recommendations on increasing organ donation rates through improved infrastructure, coordination, and funding. The other major difference with Spain is that it has a system of presumed consent. Although relatives are still consulted, the system of presumed consent, which presents a very positive view of donation, has resulted in a decrease in the number of relatives’ refusals.4 The UK can learn two lessons from Spain, one regarding improvements to infrastructure—which the BMA welcomes government commitment to—and the other regarding presumed consent.

The Organ Donation Taskforce is currently conducting an inquiry into the practical, ethical, legal, and societal implicationsof presumed consent. It will report its findings this summer. With at least two people dying every day from preventable deaths we cannot wait any longer to have this debate.