Does presuming you can take a person’s organs save lives?

I’ve pointed out several times on this blog the confused story about organ donation arising from Johnson and Goldstein’s Do Defaults Save Lives? (ungated pdf). Even greats such as Daniel Kahneman are not immune from misinterpreting what is going on.

Again, here’s Dan Ariely explaining the paper:

One of my favorite graphs in all of social science is the following plot from an inspiring paper by Eric Johnson and Daniel Goldstein. This graph shows the percentage of people, across different European countries, who are willing to donate their organs after they pass away. …

But you will notice that pairs of similar countries have very different levels of organ donations. For example, take the following pairs of countries: Denmark and Sweden; the Netherlands and Belgium; Austria and Germany (and depending on your individual perspective France and the UK). These are countries that we usually think of as rather similar in terms of culture, religion, etc., yet their levels of organ donations are very different.

So, what could explain these differences? It turns out that it is the design of the form at the DMV. In countries where the form is set as “opt-in” (check this box if you want to participate in the organ donation program) people do not check the box and as a consequence they do not become a part of the program. In countries where the form is set as “opt-out” (check this box if you don’t want to participate in the organ donation program) people also do not check the box and are automatically enrolled in the program. In both cases large proportions of people simply adopt the default option.

Johnson and Goldstein (2003) Organ donation rates in Europe

I keep hearing this story in new places, so it’s clearly got some life to it (and I’ll keep harping on about it). The problem is that there is no DMV form. These aren’t people “willing” to donate their organs. And a turn to the second page of Johnson and Goldstein’s paper makes it clear that the translation from “presumed consent” to donation appears mildly positive but is far from direct. 99.98% of Austrians (or deceased Austrians with organs suitable for donation) are not organ donors.

Although Johnson and Goldstein should not be blamed for the incorrect stories arising from their paper, I suspect their choice of title – particularly the word “default” – has played some part in allowing the incorrect stories to linger. What of an alternative title “Does presuming you can take a person’s organs save lives?”

One person who is clear on the story is Richard Thaler. In his surprisingly good book Misbehaving (I went in with low expectations after reading some reviews), Thaler gives his angle on this story:

In other cases, the research caused us to change our views on some subject. A good example of this is organ donations. When we made our list of topics, this was one of the first on the list because we knew of a paper that Eric Johnson had written with Daniel Goldstein on the powerful effect of default options in this domain. Most countries adopt some version of an opt-in policy, whereby donors have to take some positive step such as filling in a form in order to have their name added to the donor registry list. However, some countries in Europe, such as Spain, have adopted an opt-out strategy that is called “presumed consent.” You are presumed to give your permission to have your organs harvested unless you explicitly take the option to opt out and put your name on a list of “non-donors.”

The findings of Johnson and Goldstein’s paper showed how powerful default options can be. In countries where the default is to be a donor, almost no one opts out, but in countries with an opt-in policy, often less than half of the population opts in! Here, we thought, was a simple policy prescription: switch to presumed consent. But then we dug deeper. It turns out that most countries with presumed consent do not implement the policy strictly. Instead, medical staff members continue to ask family members whether they have any objection to having the deceased relative’s organs donated. This question often comes at a time of severe emotional stress, since many organ donors die suddenly in some kind of accident. What is worse is that family members in countries with this regime may have no idea what the donor’s wishes were, since most people simply do nothing. That someone failed to fill out a form opting out of being a donor is not a strong indication of his actual beliefs.

We came to the conclusion that presumed consent was not, in fact, the best policy. Instead we liked a variant that had recently been adopted by the state of Illinois and is also used in other U.S. states. When people renew their driver’s license, they are asked whether they wish to be an organ donor. Simply asking people and immediately recording their choices makes it easy to sign up. In Alaska and Montana, this approach has achieved donation rates exceeding 80%. In the organ donation literature this policy was dubbed “mandated choice” and we adopted that term in the book.

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