The Danish organ donation system should be changed so that, rather than requiring you to opt-in, you must opt-out if you do not want to be an organ donor. In his new book, associate professor Andreas Albertsen from Aarhus BSS argues for a system change that will increase the number of donated organs and save more lives without violating our personal autonomy.
28.01.2021 | INGRID MARIE FOSSUM
Every year, people die while on the waiting list for a new organ. Or they are taken off the waiting list because they have become too ill for organ donation. Andreas Albertsen, an associate professor in political science from Aarhus BSS, asks if there is a way to help more people live a longer life. Yes, we can, if we make organ donation the default rather than the alternative. In other words, changing organ donation from opt-in to opt-out.
In his new book “Organdonation – og behovet for en ny model” (Organ donation – and the need for a new model), Andreas Albertsen assesses the pros and cons of different models for organ donation based on research and arguments from public debate. The facts are unambiguous: The situation in countries that use the opt-out model is generally better than countries that use the opt-in model. And the situation in countries that switch from opt-in to opt-out is generally better, in the sense that more organs are available to save lives. However, the public debate rarely takes these facts into account, according to Andreas Albertsen.
Personal autonomy
"I think we’re disguising ethical disagreement as a disagreement of fact. Proponents of the current system brush aside certain facts too quickly. The same applies to those who want to change the system. Maybe that’s just the way it is with politics. Naturally, I hope that my book can help validate our perception of what studies on organ donation tell us,” says Andreas Albertsen.
If Denmark decides to change its organ donation system from opt-in to opt-out, as the book recommends, a number of prerequisites need to be in place first. Firstly, a well-functioning donor register that people can opt in or out of without repercussion. It will also require extensive information on organ shortages and the option of donating. If these prerequisites are met, and if the relevant statutory amendments and implementation of a new system are coupled with large-scale information campaigns and continued training of healthcare professionals, then more life-saving organs will become available. This has been seen in other countries that use the opt-out model. However, more organs is not the only important consideration. A person’s right to autonomy over their own body also plays a role.
"What the opt-out system can also do, is save more lives. So if both systems are equally good at respecting human autonomy, then the fact that one system saves more lives than the other should also be an important consideration."
Associate professor, Ph.d. Andreas Albertsen, Department of Political Science, Aarhus BSS
More people would register
The authorities would like more people to decide on what they want to happen with their organs when they die and the opt-out model will better facilitate this, emphasises Andreas Albertsen.
"If we change the system, we’ll change our understanding of organ donation. It will change our interpretation of inaction - if you don’t do anything, you’ll be considered an organ donor. It will also shift society’s understanding of what it means to be an organ donor. By making donation the starting point, donation will become the norm," says Andreas Albertsen.
A system in which everyone is an organ donor from the outset and where you must opt-out if you do not wish to donate, will ensure that more people make a decision and register their choice on whether to be an organ donor.
"A change of system will generate increased focus on organ donation, and should lead to discussions both in private and across society about what organ donation is, why organ donation is important, what reasons you may have to be a donor and, of course, what reasons you may have to not want to be a donor," says Andreas Albertsen.
Today, 23 per cent of the Danish population have made an active choice on organ donation by registering as organ donors. In contrast, in Wales, where the opt-out model was introduced four years ago, 41 per cent have said yes to donating, while 6 per cent have opted out of donating.
"The best would be if everyone made a decision on organ donation. My message is that the opt-out model will ensure that more people decide on organ donation. Both by requiring that people make an active choice, and by allowing people to accept the default of being an organ donor,” says Andreas Albertsen.
Danger of incorrect registration
Not everyone registers themselves as donors. This can cause misunderstandings. Both under the current system and under an opt-out system, errors will occur in which people's organs are used in a way that they did not intend. Under the current opt-in system, the deceased may not have wanted to donate an organ, but the family chooses to donate on the deceased’s behalf. Or the opposite occurs, where the deceased wanted to be a donor but never registered in the donor register and did not convey their wishes to their family.
"These are both examples of mistakes made because we fail to respect people’s wishes. And we should be concerned about these mistakes if we think that organs should be used in accordance with people's wishes," says Andreas Albertsen.
However, he does not think that there is reason to believe that more mistakes will occur by changing the organ donation system. Among other things, he bases this on experience from Wales, where more people register their intentions, both opting in and opting out.
"Furthermore, I think there is reason to believe that Danes are able to voice their objections when they don’t like something. And I also believe that people who have a strong objection to organ donation will make it clear that they don’t want to do it. If, as in Wales, 6 per cent say they don't want to donate, then that's fine with me. Because then we won't be using their organs against their wishes. And that's good," says Andreas Albertsen.
Nudging
The organ donation models operate under two different premises. Either only people unwilling to donate are listed or only people willing to donate are listed. You could say that you are slightly nudging citizens in the direction you want.
Andreas Albertsen thinks it would be fine if the default premise becomes that you are a donor. An opt-out system would correctly categorise a very large percentage of the population in accordance with their choice regarding organ donation.
“Studies show that 80 per cent of Danes feel positively about organ donation. Many people just don't register themselves as organ donors. The inherent human tendency to postpone difficult decisions means that a lot of people do not register their intention to become organ donors. And EVERYONE would be registered correctly under an opt-out system. We’re only human and we don’t like thinking about the fact that we’ll be gone some day. Having to make a decision can sometimes feel like a burden and it'd be great if someone else could remove that burden from our shoulders," says Andreas Albertsen.
Easier for the family
We could also question whether we should preserve a family’s right to veto what happens with the organs of the deceased. Andreas Albertsen thinks that we still need to listen to the family in cases where they strongly believe the wishes of the deceased deviate from what they have passively or actively consented to. In such cases, the family's right of veto plays an important role in correcting any misconceptions, thereby preserving the deceased's self-determination.
However, under an opt-out system, situations where the bereaved are placed in the difficult position of having to decide on organ donation will be less likely.
"Opting-out means more people will register, and it will also help relatives interpret their loved one’s intentions for their organs. If they haven’t opted out, the family will know that society interprets that as a wish to be an organ donor. This will help the family understand their loved one’s wishes. In other words, you will be making it easier for the family,” says Andreas Albertsen.
Passive consent is also consent
One of the reasons why we still have an opt-in system in Denmark is because the Danish Council on Ethics is against an opt-out system. The Council places great emphasis on people's autonomy – that people's organs must be treated in accordance with their wishes. However, according to Andreas Albertsen, the self-governance argument does not hold water. He believes that the Council is overlooking two important points:
"They are of the opinion that you can only use organs from people who have consented to it. But if this is a guiding principle, then we must change the current system, because as it stands now, we ask the family to decide in cases where the deceased hasn’t made the decision already. In other words, the system lets us remove organs from people who have not consented to it themselves," explains Andreas Albertsen. He continues:
"I really think it's a mistake to phrase things the way the Council does. The opt-out system is not a system that doesn’t want people’s consent. We simply want to obtain that consent in a different way. The intention is still to respect people’s wishes and to make it possible for people to decide what happens with their organs. What the opt-out system can also do, is save more lives. So if both systems are equally good at respecting human autonomy, then the fact that one system saves more lives than the other should also be an important consideration," says Andreas Albertsen.
Another criticism of the opt-out system is that it changes the default and thereby our societal understanding of how to donate organs. Passive consent becomes equally as valid as active consent. And this is not necessarily a problem, believes Andreas Albertsen:
"In many situations, passive consent is regarded as a meaningful way to communicate our preferences. This type of consent is valid, as it is based on free, informed choices made by people who have the competences to understand. Therefore, the choice to opt out should be respected just as much as the choice to opt in, and for the same reasons. Under the opt-out system, we merely change the meaning of passivity, but we do not alter people’s fundamental right to decide what happens to their organs.”
Organ donation in numbers:50,000 people die annually in Denmark 2,537 of these people die in intensive care units (which is a condition for becoming a donor) 259 of these people are potential donors 80 of these people ultimately became organ donors (some of the 259 could not donate due to illness and some had chosen not to be donors) 80 per cent of the Danish population feel positively towards organ donation 60 per cent of the Danish population would like to be donors Only 23 per cent of the Danish population are registered organ donors. Organ donation models:Opt-in (the current model in Denmark and in countries such as Germany, Switzerland, Australia and the US): You have to register yourself in order to become an organ donor. Opt-out (the book's recommendation and the current model in a number of countries, such as Sweden, Austria, Belgium, Spain, France, Portugal, the Netherlands, England, Wales and Iceland): You are automatically a donor and you need to withdraw from the register if you do not wish to be a donor. Indication of intent (only in New Zealand and a few US States): You are required to indicate whether you are willing to donate when you apply for a driver’s licence or other public benefit. Additions to the models:Prioritisation rules: Should organ donors be favoured if they need an organ transplant? The role of the family: In many countries, families have the right to veto. Does a family have ownership of inherited organs or does the right to veto restrict people’s bodily autonomy? Source: "Organdonation - og behovet for en ny model", by Andreas Albertsen. Published by Aarhus University Press |