Organ donation in Wales: An early assessment of deemed consent

Andreas Albertsen
Department of Political Science, Aarhus University

Paper: Deemed Consent: assessing the new opt-out approach to organ procurement in Wales

The shortage of organs for transplant continuous to be a sad fact across the globe. People die and suffer, while waiting for organs to become available. This sad state of affairs have sparked a number of proposed and actual changes to current organ procurement practices.

Until recently, every country in the United Kingdom had an opt-in organ procurement systems. This means, roughly speaking, that people have to register to be considered a donor. Under the alternative default setting, the opt-out scheme, if you do not register your opposition to becoming a donor, you are considered as one. In July 2013, the Welsh Assembly passed the Human Transplantation (Wales) Act. The new law changed the organ procurement system in Wales to an opt-out model. The Welsh legislation introduces the concept of deemed consent, where competent adults who have neither registered their consent, nor their objection to donation, are deemed to have no objection to donation (unless they have chosen to delegate the decision to their family). This legislative change puts Wales in the company of several European countries with opt-out systems. Similar policies are regularly discussed in Scotland, Ireland and England. The Welsh decision to move to an opt-out system was controversial. While early media reports were positive in terms of the effectiveness of the law, we are now able to conduct a fuller assessment as the laws has been in effect since December 2015.

As concerns were raised in the public debate surrounding the legislation, regarding the effect on living donation, deceased donation rates and family refusals, these parameters are evaluated. A general thought in the discussion about different organ procurement systems is, that a controversial change in how organs are procured may spark various negative reactions from the public. These may turn an expected increase in donation rates in to a net loss in available organs.

The NHS activity reports provides a detailed summary of organ donation activity. Comparing the report from 2014/2015 with the 2016/2017 report offers the opportunity to compare the last full financial year under the old legislation with the first full financial year under the new. The aim of this comparative exercise is to see how Wales fares compares to the United Kingdom as a whole. This comparison is instructive, because we then compare Wales to the parts of the United Kingdom that did not move to an opt-out system. Where comparable parameters are assed (actual donors and family refusals), the findings here are similar to those published in the official evaluation, even though the comparisons made are not identical.

Living donation in Wales rose, while it fell slightly elsewhere in the United Kingdom. In terms of deceased donation, more people registered as donors in Wales, than in the Untied Kingdom as a whole. However, more people also opted-out in Wales. This is to be expected, as the change of default makes it more important to register if you do not wish to donate. If however, we add together those who opted in, and the group who did nothing (whose consent is likely to be deemed), the change has had a very positive effect. For actual donors it must be said however, that Wales have experienced a drop, while the United Kingdom as a whole improved. This drop cannot alone be explained by the drop in potential donors, and remains something to keep an eye on. Regarding family refusals Wales have improved much. This holds both for the overall family consent rate, and for the instances where people have not registered anything regarding donation. While the above is an early assessment after only two years with the law in effect, the effects of the law on family refusals have been positive, it has not effected living donation negatively and in terms of activity in the organ registry, it provides a somewhat positive tale for other countries considering opt-out measures.

However, as the number of actual donors have not increased, there is every reason to continuously monitor the development of the Welsh opt-out experience. It should also be noted that the legislative change was accompanied by a large educational effort and public campaigns about donations. Evaluations show that these have been successful in increasing both knowledge of and support for the new legislative change. This is important to keep in mind, as one should not expect that undertaking the legislative change without these efforts would accomplish as much. Importantly, without the effort to increase public knowledge about the change in donation system, it would also be highly questionable whether deeming consent of those who do not register anything on the donor register would be warranted.