Presumed Consent

Presumed Consent

Some countries have adopted the opt-out policy that is usually called presumed consent (or deemed consent). In a strict application of this policy, all citizens are presumed to be consenting donors unless they explicitly register as unwilling donors. In settings where few people opt out, this policy has considerable appeal. From the standpoint of saving lives, it might seem likely to have significant benefits. And from the standpoint of the rights of Potential Donors, it might seem pretty good. After all, they can opt out. For that reason, presumed consent might appear unobjectionable in terms of the interests of Families as well.

But not so fast! In any context, the very fact that nearly everyone goes along with the default might give us pause, or at least encourage us to ask what, exactly, is happening here. If people are not opting out, it might be because of inattention or inertia, not because the default captures what they would do if they were actually to make a decision. If most people are not carefully considering this choice or don’t even know about the policy’s existence, then perhaps we should not be comfortable taking their inferred preferences seriously. In fact, we believe that in countries where only a tiny number of people have opted out, it does not make sense to give a lot of weight to people’s failure to opt out—in the sense that their failure to do so should not necessarily be taken to reflect their true convictions.

To examine this issue further, let’s think a bit more about the ethics of choosing default rules. One principle is that choice architects should strive to pick defaults that are consistent with the choices people would make if they had all the relevant information, were not subject to behavioral biases, and had the time to make a thoughtful choice. Because surveys indicate that in many countries a large majority of citizens do want to be organ donors, presumed consent seems broadly consistent with this rule (though whether a change of default actually increases donations is a separate question). But there is another factor to consider. How strongly do we want to infer someone’s preferences from their failure to take some action? Especially when opt-out rates are quite low, two equally plausible explanations for inaction are lack of salience (they didn’t know they had a choice) and sludge (opting out is costly).

So, given that the failure to opt out is not always a clear signal of preference, we have to be careful how we choose the default. To illustrate, let’s compare two opt-out policies: presumed consent and automatic enrollment in a retirement savings program. Someone enrolled in a retirement plan by default should be clearly notified so that the opportunity to opt out is real. If she notices only later, or initially said “yeah, whatever” without much thought, she may still be able to change future contributions. Access to money already contributed depends on the plan’s rules and may involve restrictions or penalties. Even with those limits, there is more opportunity to reconsider than after an organ has been removed.

By contrast, there are people who are strongly opposed to anyone doing anything to their bodies after they die—but who may not even be aware of the policy, much less know what they need to do to opt out. Reminders can help, but they might not be sufficiently salient, and people might procrastinate. If they do not want to be organ donors, should their wishes be ignored? As we have said, many people insist that the answer is clearly no. Wills are legal documents that determine how money and other possessions are distributed among heirs. If we think that the dead should have the right to determine how their money is spent, shouldn’t they also have the right to decide what is done with their body? Similarly, we honor the previously stated wishes of patients regarding how they wish to be treated in end-of-life care.

Now consider the family members of the deceased. At the time of our account, very few countries, if any, implemented strict (or “hard”) presumed consent without consulting family members. In the systems we discussed, relatives were informed of the proposed donation, and their objections prevented removal. These were “soft” policies that required consultation with Families and respect for their wishes. In our view, this policy imposes cruel and unusual punishment on Families, many of whom are already coping with the death of a loved one, often with little notice. (Accidental deaths such as those on the highway are a frequent source of young, healthy organs.)

Under presumed consent, the problem, as we see it, is that it is actually a Families consent policy, and Families have very little information about donors’ wishes. The fact that someone failed to opt out of some policy may not be very informative, especially if almost no one is doing so. In many countries with a presumed consent system, there is not a registry of people who have made an active decision to become an organ donor. Wales and England were exceptions in our account: after adopting soft presumed consent, they retained their existing donor lists and encouraged new sign-ups. Still, we worry that over time, people will not be inclined to register as donors if they think the existence of a presumed consent policy means that they have already been registered by default. Why should I bother to register if my consent has already been presumed?

Consider a further comparison. If a country were to adopt a hard presumed consent rule and nearly everyone went along with the default, then routine removal and presumed consent would be nearly identical policies. It is puzzling that between two policies so similar, one can be viewed as grotesque and the other as thoughtful and modern. Admittedly, presumed consent would, in such circumstances, save a lot of Patients’ lives if opt-out rates did not increase (an assumption that may not hold). It is true that under presumed consent, unlike routine removal, Potential Donors have the opportunity to opt out, at least in theory. If they are clearly given that opportunity, and if it is easy to do so, the ethical objection would be much weakened.

The purposes of these defaults also differ. The goal of the first is to help employees save; the goal of the second is to save the lives of third parties. Some people believe that in cases in which the health of third parties is at stake, a stronger nudge, or even a mandate, may be justified. We believe that too! But in the context at hand, we are assuming that Potential Donors should be entitled to do as they wish with their bodies and that the choice architecture should not violate their wishes. Evaluating the policy therefore requires attention to actual donation outcomes, awareness of the default, and whether people have a meaningful way to express their wishes.