The Fear Factor Read online

  This brings us back to the question of extraordinary altruism, which, again, is a voluntary behavior aimed at benefiting a stranger and which is non-normative and presents a serious risk or cost to the altruist. These stipulations ensure that, in contrast to most acts of ordinary altruism, all the possible alternative motivations have more or less been ruled out. The most common alternative possibilities—that the act was primarily motivated by kin selection, expectations of reciprocity, social norms, habit, or self-benefit—have all been stripped away. The stringency of this definition means that very few behaviors unambiguously qualify. One that does is the heroic rescue of a stranger—like the rescue that saved my life back in 1996.

  When it first occurred to me that studying people who are unusually caring might be just as informative as studying those who are unusually uncaring, my thoughts naturally turned to heroic rescuers. I thought first of Lenny Skutnik, one of the more famous names in altruism research. Skutnik was a Congressional Budget Office employee in Washington, DC, who was carpooling home to Lorton, Virginia, one frigid January afternoon in 1982 when an insufficiently de-iced plane took off from National Airport, stalled out, lost altitude, then plummeted into the Potomac River near where Skutnik’s car was idling in traffic. Helicopters arrived some twenty minutes later to retrieve the few surviving passengers from the ice-choked river. One of them, Priscilla Tirado, was by then so weakened by hypothermia and panic that she slipped from a rescue line back into the water as Skutnik raced to a nearby riverbank. When he arrived, the scene was eerily quiet. Then a woman’s terrified voice pierced the quiet: “Will someone please help!?”

  Skutnik’s immediate reaction—“like a bolt of lightning or something hit me,” he later said—was to strip off his coat and boots and hurl himself into the 29-degree water. He swam out some thirty feet to retrieve the half-frozen Tirado and haul her back to safety. It was an incredibly dangerous thing to do. Another would-be rescuer had already been forced back by the punishing cold and ice floes. Even back on shore, Skutnik’s focus remained on the others around him. As he sat shivering in an ambulance that had run short on blankets, he gave another soaked survivor his own coat. For his deeds, Skutnik received a Carnegie Hero Fund Medal and an invitation from President Reagan to attend a State of the Union Address, at which he was hailed as an American hero—albeit a reluctant one. Like Cory Booker, he consistently resisted being labeled a hero and was never comfortable with the adulation and attention he received.

  I was tempted to reach out to Skutnik. He is a canonical example of real-world extraordinary altruism who I knew had lived in northern Virginia, minutes from my office in Georgetown. Assuming he hadn’t moved, I could probably walk to his house. But, frustratingly, for the purposes of trying to contact him, he might as well have lived on Venus.

  As a university scientist who studies human behavior, I am bound by the rules of an institutional review board (IRB), the duty of which is to protect the welfare of university research participants. My research subjects don’t need a lot of protecting, as my studies are not terribly risky. I’m not allowed to call filling out surveys or participating in a brain scan “no risk,” as it’s technically possible to suffer some sort of harm anywhere. A subject could get a paper cut from a questionnaire, or experience claustrophobia inside the MRI scanner (and of course there’s the risk of serious harm if metal is introduced). But these research techniques are considered “minimally risky”—that is, they are no more risky than other routine activities like going to school or seeing a doctor. But risks and benefits must be considered in relation to one another, and my research also does not benefit my participants at all. They aren’t receiving treatment or therapy or training that might help them personally. So to ensure a favorable risk-benefit ratio, I am required to be cautious about avoiding any practice that might make participants feel pressured to subject themselves to even the low risks that my research presents. So, for example, I can’t pay them too much. I can’t offer to pay a fourteen-year-old $1,000 for a half-hour brain scan. The chance to earn that much money might make even a very claustrophobic child feel like he had no choice but to take part. I also am required to use no-pressure recruitment tactics. I can post advertisements on flyers or in newspapers or email listservs because those advertisements don’t leave anyone feeling personally obligated to respond. What I absolutely could not do under any circumstances was cold-call Lenny Skutnik to ask him if he’d like to take part in a brain imaging study. Although a journalist or writer or market researcher or second-grader doing a class project or literally anyone other than a university-affiliated researcher could legally and ethically look up Skutnik’s name in the directory and give him a call if they wanted to ask him some questions, I, as a university-affiliated researcher, could not. And that was that.

  Luckily, heroic rescuers aren’t the only people out there who meet the requirements of extraordinary altruism. Some two decades ago, another form of extraordinary altruism was born, one that has been described as the moral equivalent of saving a drowning stranger: altruistic organ donation, which is the donation of an internal organ, usually a kidney, to a stranger. In stark opposition to a psychopath like Gary Ridgway, who destroyed a stranger’s kidney in an attempt to end his life, these altruists give a stranger a kidney in an effort to save someone else’s life.

  This kind of donation is quite a recent phenomenon. Before the 1990s, donating a kidney to anyone who wasn’t a relative was considered an “impenetrable taboo.” Most transplant physicians would refuse to perform the surgery. The reason had little to do with the technical difficulty of transplanting an organ between strangers. The first successful kidney transplant from a living donor was recorded in 1954, and the first from a living donor who was genetically unrelated to the recipient in 1967. It also certainly had nothing to do with a lack of need. Then, as now, the number of people with end-stage renal disease who desperately needed a kidney and couldn’t find either a deceased or living donor grew every year. Today over 90,000 people are on the wait list. So why did it take so long until most transplant centers would consider transplants from altruistic donors?

  The reason largely boils down to the pernicious belief that human nature is fundamentally selfish.

  Unlike completing a questionnaire or an MRI, donating an organ entails real risks. Surgeons know this better than anyone. Physicians’ first and most important oath is primum non nocere: first, do no harm. A successful surgery is one after which the patient wakes up better off than they were before, or at least no worse off, an outcome that requires a team of surgeons, nurses, technicians, and anesthesiologists to carry out dozens of delicate and precise maneuvers exactly right. Even when they do, unforeseeable mishaps sometimes occur. Infections, clots, and bad reactions to anesthesia are just a few of the complications that can cause surgery to go south. These issues are rare, thankfully, during modern kidney removals: only about one in 50 nephrectomies results in serious complications like bleeding, and only one in 3,000 results in death.

  So donating a kidney is actually considered a low-risk surgery. But to put it in perspective, compare the risk of kidney donation to the risk of skydiving—that pursuit of risk-takers and adrenaline junkies. The odds of dying after tumbling out of a plane beneath a parachute are about one in 100,000, which means that the risk of death from donating a kidney is over thirty times higher. And unlike skydiving, kidney donations pose some long-term risks as well. Officially, living kidney donors have about the same long-term health outcomes as the average person. But donors must be healthier than average to qualify for surgery. High blood pressure, obesity, or diabetes all rule out donation. So if people who start out with above-average health have only average lifetime outcomes following surgery, it suggests that the loss of a kidney could entail slight long-term risks, like increased blood pressure and a risk of kidney failure.

  But what really separates kidney donation from surgeries that are not considered “impenetrably taboo” is not its risks—which,
again, are not high—but its complete lack of benefits for the donor, at least from a medical perspective. Comparably risky surgeries are usually performed to remove organs that are diseased or causing the patient pain or even just inconvenience, like the removal of a gallbladder prone to stones or of a uterus to prevent pregnancy. And of course, millions of non-zero-risk surgeries have been performed for decades for purely cosmetic reasons. What makes these surgeries ethically uncomplicated, though, is that all their risks and benefits, however minor, redound to the same person. This person has presumably decided that the balance between risks and benefits is favorable, and that surgery is ultimately in his or her best interest.

  What makes a kidney donation different is not its overall risk-benefit ratio, which is very favorable. It is that the risks and benefits are shared—unequally—between two people. The donor volunteers to take on only medical risks to give the recipient all the medical benefits. Living organ donations represent, in the words of the surgeon Dr. Francis Moore, “the first time in the history of medicine [that] a procedure is being adopted in which a perfectly healthy person is injured permanently in order to improve the well-being of another.” If you assume that human nature is fundamentally and uniformly selfish, and that all human decisions and behavior “have the Self primarily for their object,” the whole thing simply makes no sense.

  Nevertheless, after the first successful living kidney transplant, surgeons gradually began performing more such surgeries in the ensuing decades. The problem of kidney failure was not going away—indeed, it kept getting worse. The wait list ballooned with every passing year. But for the most part the only acceptable donors were deemed to be people very closely related to the patient, preferably blood relatives, although in some cases spouses or other relatives would be considered. A few transplant surgeons would even perform donations between unrelated but emotionally close donor-recipient pairs, but most would not. Why? Again, the rationale boiled down to the belief that such a surgery was only justifiable if donors personally stood to benefit at least as much as they risked from the surgery—a rationale based wholly on the norm of self-interest. The thinking went: perhaps a mother who donates a kidney to her daughter, or a husband who donates to his wife, isn’t medically benefiting from the procedure. But they will benefit by being spared the grief of losing a loved one, or the hardship of losing someone they depend on, or from having to support the patient through endless rounds of dialysis. Perhaps these benefits, all added together, could outweigh the risks of the surgery. Surgeons would even go so far as to add improved self-esteem to the “gain” side of the donor’s ledger. But the idea of removing someone’s kidney in the absence of any concrete compensatory gains they might accrue by donating remained unfathomable.

  What changed in the late 1990s? Arguably, it was (in part) the persistence and openness of a woman who has chosen, until now, to remain anonymous. I can reveal here, with her permission, that her name is Sunyana Graef. She is a sixty-eight-year-old mother of two who lives in Vermont, where she has worked for twenty-eight years as a Zen Buddhist priest. She is one of altruistic kidney donation’s “index cases”—a patient whose altruistic donation played a major role in changing the donation landscape. Graef was not the first person ever to donate a kidney to a stranger; there are reports of such donations as early as the 1960s. One detailed case study of another altruistic donor who falsely reported that she knew her recipient (and was later found out) was reported in 1998.

  But Graef’s was the first reported nondirected donation. This is considered the most extreme form of altruistic donation, as the donor does not specify a recipient, does not know the recipient’s identity before surgery, and in some cases never learns who received their kidney. A donation of this kind—one that restores an unknown and unspecified receiver to full health and life—achieves the very highest moral status. The Hebrew philosopher Maimonides considered a gift that leaves both the giver and the beneficiary anonymous and that ends the beneficiary’s need for further charity to be the very highest form of giving. Ancient Greek philosophers would have considered such an act to exemplify the highest form of love, which they termed agape—unconditional love for any person, regardless of circumstances, rather than for any particular person or group. Most relevant for Graef, Zen Buddhism also advocates love and compassion that flows toward all beings, rather than being directed at any one individual.

  A second major difference was that, prior to Graef’s donation, donations between strangers had largely been performed quietly and, on the part of the surgeons involved, often reluctantly. These donations were rarely formally recorded, and they generated no major cultural shifts. The same cannot be said for Graef’s donation.

  It was 1998 when Graef first contacted a nationally renowned transplant center in Massachusetts and told them that she had given it some thought and really wanted to give one of her kidneys to someone on the transplant waiting list. She had never heard of anyone giving a kidney to an unspecified stranger before, but it seemed like it should be possible, and such a donation would be in keeping with her Buddhist vow to help all living things. She already volunteered some money and time to help others, but as a mother and full-time priest, she didn’t have very much of either, and it didn’t feel like enough. But she did have two kidneys. She had read up on, and was comfortable with, the level of risk the surgery would involve, as was her husband. The recipient could be anyone, she said, who didn’t kill for a living (like a hunter). And she wanted the donation to be anonymous. Her plan was to register at the hospital under an assumed name and to never meet the person who received her kidney so as not to cause the recipient to feel any debt or obligation to her. What do you think the transplant coordinator said? The response was polite, but flat: No way. Under no circumstances would they entertain the idea of this donation.

  Think of it! That year some 35,000 Americans were stuck on the kidney transplant waiting list, most of them too sick to survive for more than a few years without a donor. And as any transplant professional would know, most of them wouldn’t find one. Many patients have no family members eligible to donate, and there are never enough deceased donors to make up the difference. (Transplants from deceased donors are less effective anyhow.) And here came a woman offering to give one of these patients a golden ticket—restoration to health and a normal life—by undergoing a surgery that is sufficiently safe that if she had been the patient’s sibling or parent it would have been perfectly acceptable. But the transplant center told her no, absolutely not—not because what she was seeking was impossible or even terribly difficult from a surgical perspective, but because what she sought seemed psychologically impossible.

  For anyone who believes that human nature is fundamentally selfish, Graef’s request could only be explained by one of two unappealing alternatives. The first was that her wish reflected some self-interested calculus and she expected to receive benefits sufficient to compensate her for the risks she would assume. But the nature of her request eliminated any concrete benefits. By requesting that the transplant center pick the recipient, she ensured that this person would not be a relative or friend of hers, so her wishes couldn’t have been driven by the desire to help a blood relative or by expectations of reciprocity. And her request for anonymity ensured that she couldn’t receive any social or financial reward. Organ donors can’t legally receive payment anyhow. (This requirement, by the way, makes them the only ones involved who get no concrete benefits from their donation—the physicians, technicians, and hospital staff all get paid, and the recipient gets a kidney.) And by never meeting the recipient, Graef wouldn’t even have the pleasure of seeing this person returned to good health or hearing the words “thank you.”

  The only other alternative—again, for anyone who believes that rational self-interest drives all human decisions—was that her wish did not reflect a rational calculus. In other words, she was crazy. She was irrational or delusional. Perhaps she believed that undergoing the surgery would fix some
problem in her own life. Perhaps she was suicidal and hoping the surgery would go awry. Or perhaps she was seeking medical attention for pathological reasons; she could have been exhibiting a symptom of a rare factitious disorder called Munchausen syndrome. Any of these motivations would render her an unacceptable candidate for surgery.

  Fortunately, Graef wasn’t content with the first answer she got. In her mind, the donation was already a foregone conclusion at that point. “It was like it wasn’t my kidney anymore. I just needed to find a way to make the donation happen,” she later recalled to me.