organ donation

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Drivers applying for new licences from July will have to respond to a question about organ donation, as the government bids to increase donor numbers.

Under the “prompted choice” system, applicants must register to donate, say they have already signed up or state: “I do not want to answer this now.”

Under the DVLA’s current scheme, people can skip the question, but nearly 8m people have still signed up as donors.

More at the BBC.

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Last year, inspired by Richard Thaler’s column on organ donation, software developer Raymond Cheung designed an iPhone application to make becoming an organ donor in your home state as easy as a few slides and taps of the finger. Better yet, the app was free! Sadly, the New York Times reports on that the app has been downloaded fewer than 1,000 times – “lost in the sea of entertainment, sports and utility offerings that dominate Apple’s App Store…which is a shame for those who are interested in public health issues and those who are inclined to donate.” Indeed.

The article’s writer signed up to be a donor through the app, which raised an interesting dilemma. After confirming his registration, he received a notice that his decision would not affect his existing organ donor information at the DMV. But what if the two were potentially in conflict? For example, he signed up as an organ donor online, but hadn’t signed up at the DMV. Which answer would hospitals follow?

Mr. Fleming, of Donate Life America, said hospitals would follow a person’s latest directions, whether they were registered with the Department of Motor Vehicles or an organ procurement organization.

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California’s new organ donor law, passed in part because of Steve Jobs, creates the nation’s first live donor registry for kidney transplants, and includes a provision requiring drivers to decide whether or not to be an organ donor when they renew their licenses. A bill supporter thinks this switch will double the number of donors. In Texas, a similar switch doubled organ donors in less than a year (though Texas started from a base of just 2 percent – hey, it’s still a big state.)

Over at Marginal Revolution, Alex Tabarrok’s take on required choice “is mixed but I hope it works.”

I see it as follows. The benefit is that if a potential donor has said yes to organ donation then next of kin almost always agree to their wishes so if more people positively affirm that is good. The cost, however, is that now “no” really means “no” and next of kin will presumably agree to that as well. Previously, next of kin might have said yes to non-signatories.  Let’s use some back of the envelope figures:

100 potential donors
20 signed organ donor cards
80 do not sign but, among these, half the families say yes so 40.

Total: 60 donors.

So with declaration you need more than 60 to agree to be organ donors, i.e. a huge increase in those saying yes.  It could happen if what people say on surveys about supporting organ donation is true but I would have been much happier with even a small incentive to sign.  How about a free iPhone for signatories?  Or at least some more minutes!

Yes, more iPhones please! Tabbarok has a valid point, in theory, but only if required choice works on the front lines of bureaucracy the way that he says it does. So far, it does not. Along the spectrum of opt-in-to-presumed-consent policies, the more moderate required choice is still a new option and could evolve.

As implemented, “required choice” does not force a person to answer yes or no. You can refuse to answer, say you aren’t sure, say you want to decide later. Those are all treated as “not yes” by the DMV staffer. What’s with classifying them as “not yes”? That will become clear shortly.

Right now, there are two reasons why the cost that Tabarrok points to — “that now ‘no’ really means ‘no’ and next of kin will presumably agree to that as well” — is not actually being paid.

The first reason is the spread of first-person consent laws, which according to Donate Life America, are now in all 50 states. These laws basically say that if a person agrees to be organ donor those wishes must be respected. A family can’t overturn them (or would require a herculean lawyer to help with the lift). The second reason is that the required choice policy doesn’t officially register a “no” response – at least that is how it works in Illinois. A person is asked if he wants to be a donor. If he says yes, his name is added to the donor registry. If he says no, his name is not added to the registry. It is not added to a separate non-donor registry. In effect, it gives doctors another chance to ask family members if they’d like a person’s organs donated after death, even if that person told the person at the DMV some years ago she didn’t want to be an organ donor.

A similar practice will apply with the California law. The license application will

“contain a space for the applicant to enroll in the Donate Life California Organ and Tissue Donor Registry. The application shall include check boxes for an applicant to mark either (A) Yes, add my name to the donor registry or (B) I do not wish to register at this time. In addition, the DMV: “shall inquire verbally of an applicant applying in person … at a department office as to whether the applicant wishes to enroll in the Donate Life California Organ and Tissue Donor Registry.”

Readers can obviously offer their own critiques about the wisdom and ethics of this practice.

In combination, the two laws work to reinforce each other. Required choice boosts the number of people who agree to be organ donors vis-a-vis the original opt-in policy. With first person consent laws, the threat that large numbers of these organs will not be available because of family objections is removed (even if not a lot of families would overrule a member who expressed a desire to donate). With a “yes” registry, but not a “no” registry, a person has to take independent steps to document her unwillingness to be an organ donor. At the hospital, after death, the people who said they didn’t want to be donor when they got a new license are treated the same as the people who said, “I don’t know” or “I’d like to decide later.”

Required choice policies raise questions about whether to treat a “no” answer with the same binding symmetry of a “yes” answer, and whether strong records of those answers should be kept. To debate that, though, it’s important to know what required choice is as a policy idea and as a policy fact. Or for now, to maybe start giving it a different name.

Ps. Steve Jobs originally wanted a presume consent rule.

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Since the start of the year, the number of organ donors in Texas has doubled. Why? One of the main reasons is the shift to a system that requires driver’s license and ID card clerk to ask applicants the following question: “Would you like to register as an organ donor?”*

Nearly 70,000 donors are signing up each month now. There’s still a long way to go, though. At the start of 2010, just 2 percent of Texas adults were registered as donors. Today, that number is at 5 percent – 936,000 people.

Full story in the Houston Chronicle. Hat tip: Donnie Hall.

*Although clerks must ask it, applicants aren’t forced to answer if they don’t want to.

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They say making organ donor the default option would improve a donor system that ranks last in the U.S. according to the National Donor Designation Report Card. Full story is here.

Addendum: Discussion over at Room For Debate.

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Israel is launching a potentially trailblazing experiment in organ donation: Sign a donor card, and you and your family move up in line for a transplant if one is needed. The new law is the first of its kind in the world, and international medical authorities are eager to see if it boosts organ supply.

Full AP story is here. The current organ donor rate in Israel is 10 percent, a figure that is thought to be driven by religious traditions. These traditions are likely why switching the default rule is a controversial move. More controversial than this proposal, anyway.

For an organ donor system to work, you need lots more potential organs, not lots more people who want one. That means the key to more organ donations is supply. But this design creates interesting perverse incentives. By moving up an entire family, this system allows one person to stand in for the demand of many. The incentive to move up is a strong one, and the possibility that a small group of new demanders are unlikely to increase the supply of organs, while driving up demand is a real one. In the article, Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania doubts “those signing donor cards would gain a significant advantage, because their queue would become much longer.”

Asked to expand on his thoughts, Caplan responded to a Nudge blog inquiry:

To be a cadaver organ donor you must die while on life support of a head injury permitting a brain death diagnosis with a relatively healthy body. Few deaths meet this description. Further to get an organ you must match for blood type and size of organ as well as usually antibody match. You also probably ought to be in geographic proximity to the donor. So offering an advantage to would be donors requires that you sign up huge numbers of donors to have a shot at getting a matched organ if you need one. But the more donors you sign up the less likely it is that anyone of them will gain an advantage in gaining access to an organ.

So at the end of the day the idea sounds good and in my view raises no ethical objection, but it is not readily implemented in the real world of transplant donation and allocation in terms of what it suggests will happen to those willing to identify as donors.

Hat tip: Peter Warnock.

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A few weeks ago Richard Thaler wrote this in his Economic View column about organ donation:

The key, however, is to make signup easy, and requiring people to make a choice is just one way to accomplish it. The private sector could help create other simple methods. Here is a challenge to Mr. (Steve) Jobs: Why not create a Web site — and a free app for the iPhone — that lets people sign up as organ donors in their home states?

Steve Jobs didn’t meet Thaler’s challenge, but Raymond Cheung of Serenity Integration did. “Basically, I was inspired after reading Dr. Thaler’s column,” he tells the Nudge blog. So he directed his team of developers to create an iPhone app called Donate Lives that lets users identify where they live, and then takes them directly to the state web site where they can sign-up to become an organ donor

The app was pretty simple to make, Cheung says. It took a couple days to build. Getting the free app approved on iTunes took a couple weeks. It’s available for download now, so head over to iTunes if you own an iPhone. “Even if a small fraction of those download the app and register, I’d consider it successful especially if it leads to even one more life saved,” says Cheung.

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Richard Thaler writes about opt-in vs. opt-out vs. mandated choice organ donation policies in this week’s Economic View column. Illinois follows a mandated choice policy.

Here is how it works: When you go to renew your driver’s license and update your photograph, you are required to answer this question: “Do you wish to be an organ donor?” The state now has a 60 percent donor signup rate, according to Donate Life Illinois, a coalition of agencies. That is much higher than the national rate of 38 percent reported by Donate Life America

The Illinois system has another advantage. There can be legal conflicts over whether registering intent is enough to qualify you as an organ donor or whether a doctor must still ask your family’s permission. In France, for example, although there is technically a presumed-consent law, in practice doctors still seek relatives’ approval. In Illinois, the First-Person Consent Law, which created this system, makes one’s wishes to be a donor legally binding. Thus, mandated choice may achieve a higher rate of donations than presumed consent, and avoid upsetting those who object to presumed consent for whatever reasons. This is a winning combination.

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The public says yes. The British Medical Association and the Royal College of Nursing say yes. British doctors say maybe. Those are the results of a recent poll in the U.K. on organ donation.

Two thirds of the public now supports the idea. Intensive care doctors are split, with half saying a move could damage the trust between patients, their families and doctors. (The sample size for the doctors was only 125.) The concerns are similar to the ones David Orentlicher raised in his working paper.

Some doctors are concerned presumed consent might instill doubts in patients and relatives about a potential conflict of interest.

Mr Gunning said: “In intensive care patients are often admitted suddenly and the families have to comes to terms very quickly with the fact that someone may not survive. It is very important in this situation that we have their trust, that we are doing is going to be in the best interests of that patient.”

While he strongly supports the principle of organ donation, he believes any consideration of presumed consent is premature.

“The trouble is we live in a society where people are very much worried about the interference of the state. I think you would find that families would view this as taking the organs – and that would create a tension.”

Hat tip: Jeffrey Sybesma

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Indiana law professor David Orentlicher has a working paper (forthcoming in the Rutgers Law Review) about the potential pitfalls of implementing a presumed consent organ donation policy in the United States. Part history, part policy advisory, Orentlicher points out that presumed consent laws for body parts like corneas and pituitary glands were adopted in a number of states in the second half of the twentieth century – reaching a peak in 1980s – with underwhelming success. Their failure, he says, was due to family member remonstrations at the actual moment of organ removal on religious, medical, and ethical grounds. The result was either fewer organs donated than originally presumed, and in some circumstances a public backlash.

Continue reading the post here.

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