Kidney Donor Chains and the Bad Art Friend

A few years ago, Al Roth published a wonderful book called Who Gets What and Why, that describes in a breezy and informal way the highly technical fields of matching and market design. These are fields to which he has made pioneering contributions. Whenever I’m asked what economics has ever done for the world, I point to the third chapter of this book, which is called “Lifesaving Exchanges”. Here Roth describes the extraordinary role played by non-directed living kidney donors, whose single gift can end up saving not one but dozens of lives by initiating a chain of transplants.

I’ve been thinking a lot about this chapter over the past few days, as I’ve watched an extremely polarized and frankly distressing response on social media to Robert Kolker’s article Who is the Bad Art Friend? The piece is about a non-directed donor, Dawn Dorland, who publicized her actions on a private facebook group, and subsequently discovered that a member of that group, Sonya Larson, had written a short story loosely based on the event. Not only did the story paint the donor in a rather unflattering light, an early version offered for sale contained whole sentences lifted from one of Dorland’s posts. I’ll get back to this tale in a bit, but first want to describe how kidney donor chains work, relying heavily on Roth’s chapter.

There are about 107,000 people waiting for a kidney transplant at the moment. The average wait time is 3-5 years, during which many patients are on dialysis. Life expectancy on dialysis is about 5-10 years, and the process is costly, time-consuming, and exhausting. Finding a match is therefore a life-changing and potentially life-saving event.

There are four ways in which a patient on the list can receive a transplant—from a recently deceased donor, from a directed donor (typically a relative or close friend) who is willing to donate only to them, from a cycle involving directed donor-recipient pairs, and from a chain set in motion by a non-directed donor. The first is the traditional method, and the second is also straightforward, but requires the donor and recipient to be compatible. Cycles and chains are a bit more complicated, and leverage the power of donation in interesting and beautiful ways.

The simplest type of cycle is a swap. Suppose that Aisha is willing to donate to Bernadine, and Camila is willing to donate to Derrick, but neither donor is compatible with their intended recipient. If Aisha is compatible with Derrick, however, and Camila is compatible with Bernadine, a swap can be arranged. One can imagine longer cycles too, starting and ending with the same pair, but transitioning through several others. Roth explains why such transplants have to be conducted simultaneously:

With nonsimultaneous surgeries, in a conventional exchange between two pairs, a donor might renege and leave the potential recipient in the lurch. You can imagine how this would play out: I give a kidney to someone’s brother today, in the expectation that my wife will receive one tomorrow. But when tomorrow comes, my wife’s prospective donor backs out. I’ve given up my spare kidney—which means that we can no longer participate in some future kidney exchange—and my wife still needs a kidney. The broken link has irreparably harmed us. To prevent that kind of harm, exchanges in closed cycles are always done simultaneously.

The need for simultaneity creates enormous logistical difficulties, especially when large numbers of pairs are involved. This is where non-directed donors can play such a vital role, by initiating donation chains rather than cycles. A chain begins with a non-directed donor, transitions through several directed donor-recipient pairs, and ends with a recipient who has no directed donor. In this case surgeries need not be simultaneous. As Roth explains, the “presence of a non-directed donor can remove the risk of… severe harm to a pair that gives a kidney and then doesn’t get one in return. Now, every pair could be scheduled to receive a kidney before they gave one. And if the chain was broken unexpectedly—that is, if someone proved unwilling or unable to donate—no one would be irreparably harmed.”

Roth goes on to describe in vivid and moving detail a particular donor chain, initiated by a non-directed living donor called Matt Jones:

Jones was the manager of a National Car Rental office when he decided to give up one of his kidneys. Though only twenty-eight, he wanted to do something admirable that his kids would remember him by. Jones’s donation in July 2007 set off a chain of ten transplants that stretched over the next eight months.

Jones started the ball rolling by flying to Phoenix and donating to a woman there. Her husband then donated to a woman in Toledo. By March 2008, the chain had passed through six transplant centers and five states. Twice, months stretched between the time the patient in a pair received a kidney and the time the donor in that pair gave one. Yet despite the long waits, no one reneged. In November 2009, People magazine declared Mike and the donors in that chain “heroes among us.” And the chain hadn’t ended yet: the last person in People’s display of twenty-one patients and donors was twenty-nine-year-old Heleena McKinney, the daughter of the last recipient. Under her photo was the caption “Donor-in-waiting.” As it happens, McKinney was hard to match, but almost three years later a suitable recipient for her kidney was found, and she continued the chain, which eventually included sixteen transplants and ended when the last donor gave a kidney to a patient on the waiting list who didn’t have a donor to continue the chain.

Thanks to Mike’s chain and the publicity surrounding it, a revolution had begun. Potential donors realized that their gift might save ten lives, and more of them began contacting Mike’s and other hospitals. Our report on that first nonsimultaneous chain in the prestigious New England Journal of Medicine gave it an imprimatur that allowed other transplant centers and kidney exchange networks to explore such chains with confidence…

As I write this in 2014, kidney exchange has become a standard method of transplantation in the United States and is growing around the world. As experience accumulates, the evidence grows that potentially long nonsimultaneous chains are good for kidney patients, and particularly good for the hardest-to-match patients. Thousands of transplants have been accomplished that wouldn’t otherwise have been possible. In recent years, the majority of these have been through chains.

The bottom line is this—a living non-directed donor provides an incalculable benefit to society. This is true regardless of the motives for donation. It is true even if the donor seeks recognition or social reward, or is narcissistic and self-absorbed.

For the record, I do not think that Dawn Dorland is narcissistic or self-absorbed. Based on video clips that are available online, and the tone of a letter she wrote to correct errors in reporting, she seems perfectly pleasant and genuinely kind. But even if she were a terribly flawed human being, I simply cannot understand what would drive people to mock and ridicule her rare and commendable act.

There are two other issues raised by this saga that are close to my heart—intellectual property and the power of prestige.

I believe that our current intellectual property regime is far too restrictive. This wastes resources and stifles innovation. I have been involved with the CORE project from its inception, helping produce open-access resources for the teaching of economics that are distributed free of charge worldwide under a creative commons license. But open-access distribution relies on meticulous and generous attribution—any idea or invention on which we build must be promptly and properly attributed to its creators. It is quite possible that Dawn Dorland has a valid legal claim on her plagiarism charge under existing copyright laws. But even those who consider these laws to be too restrictive should recognize that she has a valid moral claim to recognition.

Finally, the most distressing aspect of this conflict for me has been the use by Larson and her supporters of racial identity as a shield. The idea that a white woman (Dorland) is using her power and privilege to damage the career of a woman of color (Larson) has it exactly backwards. The power here resides with the more established writers, who can marshal their resources and social networks to denigrate and diminish someone for whom they feel contempt. Watching people I genuinely respect and admire take the opposite position has been deeply disappointing. I hope they will reconsider.

If there’s a silver lining to the story, it’s that kidney donor chains have gotten some publicity. Perhaps that will induce more organ donation in general, at least through the deceased donation process. Signing up takes just a minute or two—just select your state here and scan your driver license. You’ll even see links to distribute your registration information on social media. But you may want stop and think for a moment before you share.