Andreas Albertsen_The ethics of the organ shortage | Carlsbergfondet
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The ethics of the organ shortage: Permissible ways to end the suffering

Postdoc-stipendium i Danmark | 10/10/2018

In 2014 Carlsberg Foundation granted Andreas Albertsen a three-year Postdoctoral Fellowship entitled ‘Scarcity of Organs: The Role of Families, Markets and the State in closing the Gap.’ The project provides an ethical discussion of prominent proposal to end or mitigate the current shortage of organs for transplants. The project has addressed several important suggestions for how to increase the supply of organs, including whether an opt-out model is permissible. With Danes dying every year while waiting for organs and several European countries currently moving to opt-out systems this question is likely to receive increased attention in the months and years to come. In terms of SSR, the project and its conclusions are therefor likely to be a part of future debates over organ procurement in Denmark. A book on organ donation under contract with Aarhus University Press, will hopefully serve to qualify the broader debate over organ donation in Denmark.

Shortage and suffering

Across the world, an immense scarcity of organs for organ transplantations persist. For some, the scarcity means that they wait longer, that their health deteriorates before finally receiving an organ to extend and improve their lives. These are, however, the luckiest among those waiting. For others, the promise of a prolonged life is not fulfilled. They die while waiting for an organ. In Denmark, this happened 32 times in 2017.

Organs are special. They are in a very straightforward way attached to people. Organs are not produced they are (currently) donated. The scarcity and the associated suffering have prompted numerous proposals for how to increase the supply of organs. “The project set out to assess the ethical permissibility of important proposals for adjusting the organ procurement process to increase the number of organs available for transplant.” 

In doing so, the project assessed various such proposals, including giving organ donors priority in the allocation of organs, decreasing family influence on donation decisions, paying organ donors and mandated choice policies where people are forced to indicate, whether they want to be organ donors. This article focusses on one prominent model, the so-called opt-out model. All the referenced articles were written during the Carlsberg Foundation Postdoctoral Fellowship .

Figure 1: Scene from an organ transplantation. Photo: pixabay.com

Opt-Out

Traditional the opt-in model has been most frequent. This model primarily considers as donors those who have registered as such. One alternative is the opt-out model, in which everyone is a donor by default and remains so unless one declares otherwise. Opt-out systems are in place in many countries, including Austria, Belgium, Norway, Spain, and Switzerland. Recently, Netherlands, Wales and England have either introduced or passed legislation to introduce such a system. In Denmark, an opt-in system remains in place, but the debate over a possible move to opt-out resurfaces with some frequency. 

Organ shortage in Denmark

In 2017 32 people died while waiting for an organ
448 persons were waiting for an organ by the end of 2017
1.038.002 Danes are registered as organ donors
Source: http://organdonor.dk/

50.000 Danish citizens have signed a Citizen’s Proposal. Therefor the parliament is obliged to consider opt-out legislation.  Last year the Danish Ethical Council declared that they are opposed to an opt-out model for organ donation.  In assessing if an opt-out system would be the right path to pursue, there are two independent and important questions to answer. One is whether such a system would make more organs available; the other is whether the opt-out model is ethically acceptable. The project contributes to our understanding of both these questions.


Figure 2: It is important to remember that also under an opt-out model, people who do not wish to donate can register this decision. Photo: pixabay.com

Regarding the effects of opt-out, most studies suggest that opt-out model fares better in terms of providing organs.  The project contributed to this literature by providing an early assessment of the Welsh experience with opt-out. It does so by identifying various concerns associated with such a policy change and compare the development in Wales during the two years with opt-out with the development in the rest of the United Kingdom. Data released by the National Health Service (NHS) in July 2017 provide an excellent opportunity to assess this legislation in light of concerns that it would decrease procurement rates for living and deceased donation, as well as sparking an increase in family refusals. None of these concerns have come to pass, with Wales experiencing more registered donors, fewer family refusals, and more living donations. However, as the number of actual donors has dropped slightly from a high level, the situation must be monitored closely in the years to come. Recent NHS statistics indicate that the numbers for deceased donations are increasing in line with the already mentioned expectation. 

The project also contributed to improving our understanding over, whether opt-out-systems are permissible. One factor to take into account in this assessment is the ability of such a measure to increase the number of available organs. It is, however, not the only factor. Another important factor often highlighted is the autonomy of donors, where it is broadly speaking considered valuable that people can choose what happens with their organs after they die. Autonomy was also highlighted by the Danish Ethical Council as one reason not to support an opt-out model. Such arguments fail to notice that “under opt-out legislation, people retain the right to decide what happens with their organs. The system is simply reversed in that not registering to opt-out of the system is taken as a willingness to donate. People still have the final say over whether their organs are made available for transplants.

Comparing the alternatives

Finally, any proposal for reforming the organ procurement system cannot be evaluated in isolation. We need to compare it to alternative systems, which may do better in some relevant aspect. Such a broader comparison is conducted in a Danish book entitled ‘Yours or our organs?’, which is under contract with Aarhus University Press. Here opt-out systems are evaluated, and alongside prominent alternatives. These include giving organ donors priority in the allocation of organs, paying organ donors and mandated choice policies, where people are forced to indicate, whether they want to be organ donors.

Selected references:

Albertsen, Andreas. 2018. “Deemed Consent: Assessing the New Opt-out Approach to Organ Procurement in Wales.” Journal of Medical Ethics 44 (5): 314. https://doi.org/10.1136/medethics-2017-104475.

Midtgaard, Sören Flinch, and Andreas Albertsen. 2018. “I Hvilket Omfang Må Staten Puffe Os Til at Donere Vores Organer?” Politica 50 (2): 217–35.

http://politica.dk/fileadmin/politica/Dokumenter/politica_50_2/midtgaard_albertsen.pdf

Albertsen, Andreas. Yours or our organs?  Aarhus University Press (under contract)

Albertsen, Andreas. 2017. “Priority to Organ Donors: Personal Responsibility, Equal Access and the Priority Rule in Organ Procurement,” March.

Other sources of interest

https://www.dr.dk/radio/p1/supertanker/supertanker-31

https://videnskab.dk/krop-sundhed/taenk-over-dette-foer-du-stoetter-at-alle-over-18-aar-automatisk-registreres-som

https://videnskab.dk/krop-sundhed/forsker-derfor-er-automatisk-organdonation-en-god-ide