The Best American Science and Nature Writing 2013

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The Best American Science and Nature Writing 2013 Page 40

by Siddhartha Mukherjee


  Getting there will mean essentially dismantling the health-care industry as we know it. (Thus the creative destruction of Topol’s title.) Or, as Larry puts it: “A lot of enormously wealthy, established, powerful institutions in our society are going to be destroyed.” And why not? Over the past twenty years, computers have been toppling and rebuilding industries one by one, from retail sales (Walmart and Amazon), to banking (ATMs and online services), to finance (high-speed online investing), to entertainment (web streaming, downloads, YouTube, and so on), to publishing (e-books and news aggregators). We’re just babes in this new digital era, and it will eventually upend almost every field of human endeavor.

  Larry sees medicine as a stubborn holdout. Current efforts to reform the system—for instance, the Obama administration’s initiative to digitize all health records by 2014—are just toes in the water. Medicine has barely begun to take advantage of the million-fold increase in the amount of data available for the diagnosis and treatment of disease. Take the standard annual physical, with its weigh-in, blood-pressure check, and handful of numbers gleaned from select tests performed on a blood sample. To Larry, these data points give your doctor little more than a “cartoon” image of your body. Now imagine peering at the same image drawn from a galaxy of billions of data points. The cartoon becomes a high-definition, 3-D picture, with every system and organ in the body measured and mapped in real time.

  Indeed, a very early prototype of this kind of high-definition image already exists at Calit2. It is, of course, of Larry.

  Inside a “cave” fashioned from large HD screens (each with dual rear projectors) and linked to eighteen gaming PCs to create a graphics supercomputer, Larry and I step into a stunning image assembled from an MRI scan of his torso. The room, the size of a walk-in closet, is lined with giant screens, front, sides, and back. More screens angle from these walls toward a floor that is illuminated from above. Two curved, waist-high metal railings offer support, because viewers at the center of this visual world can easily lose their balance. A sensor strapped to your forehead tells the computer where you are looking, so as you turn your head it smoothly blends the images on the screens to create a seamless 360-degree alternative world. (This is clearly the future of video games and cinema.) I had to lean on the metal bars to remind myself I was not someplace else. Once we were in position, Jürgen P. Schulze, a Calit2 research scientist, punched up a display of Larry’s own coiled, sixty-three-year-old entrails. I felt as if I could reach out and touch the wrinkled contours of his intestines and arteries.

  Larry’s inner ten-year-old rejoices. “Look!” he says, lifting and opening his hands. “This is me!”

  He points to the source of his health concerns, the precise six-inch stretch of his sigmoid colon that is visibly distorted and inflamed. This is Larry’s discovery and his enemy.

  I note that the display breaks new ground in the annals of self-disclosure: Larry is literally turning himself inside out for a journalist. He does worry a little about making public such intimate details, but this openness is part of how he believes medicine ought to be—and ultimately will be—practiced. The current consensus that medical records should be strictly private, subject to the scrutiny of only doctor and patient, will be yet another casualty if Larry’s health-care vision comes to pass. “A different way to organize society is to say it is human-focused, human-centered, patient-centered, and that there are no legal or financial repercussions from sharing data,” he says. “There is a huge societal benefit from sharing the data, getting it out from the firewalls, letting software look across millions of these things.”

  The way the system works now, when a technician examines the MRI of a patient’s abdomen, in two dimensions, on a single screen, she compares and contrasts it with perhaps thousands or even tens of thousands of other images she has seen. She then writes a report to the physician explaining, on the basis of her memory and experience, what is normal or abnormal in what she sees.

  But “software can go in, volumetrically, over, say, a million different abdomens,” says Larry, gesturing at the image of his own innards, “and come up with exquisite distribution functions of how things are arranged, what is abnormal or normal, on every little thing in there. In my case, what I have found is inflammation. Unaddressed, it may lead to structural damage and maybe eventually surgery, cutting that part out. So I am going to have another MRI in three months, and that will tell me whether the things I am doing have made it better, or if it is the same, or has gotten worse.”

  It’s that sense of control that appeals to Larry as much as anything.

  “The way we do things now,” he says, “the technician will examine it and write up a report, which goes to my doctor, and then he explains it all to me. So I am disembodied. Patients are completely severed from having any relationship with their body. You are helpless.”

  Shedding that sense of disembodiment and helplessness is, in theory, one of the most attractive features of Larry Smarr’s quantified self. Individuals will understand their own bodies and take care of themselves; doctors will merely assist with the maintenance and fine-tuning. With that sense of personal ownership established, Larry believes, the average American won’t continue to drink 500 cans of soda a year, or ingest some 60 pounds of high-fructose corn syrup. After all, educational campaigns about cigarettes have helped lower the share of smokers in America to below 20 percent. If we made such inroads into the obesity epidemic, Larry says, “we would have a national celebration.”

  For his part, Larry is no longer disembodied. He has had key snippets of his DNA sequenced and will have the whole thing completely sequenced by the end of this year. In just what he has seen so far, he has discovered telltale markers linked with late-onset Crohn’s disease. He has developed his own theory of the disease, based on his reading of the most recent medical literature and his growing perception of himself as a superorganism. In a nutshell, he suspects that some of the essential bacteria that should line the walls of his intestine at the point where it is inflamed have been killed off, probably by some antibiotic regimen he underwent years ago. So he has begun charting, through stool samples, the bewilderingly complex microbial ecology of his intestines.

  He showed me a detailed analysis of one such sample on his computer, drawing my attention to the word “firmicute.” “So, what the hell is a firmicute?” he asks rhetorically. “And in particular, it is in these two groups, Clostridium leptum and Clostridium coccoides. So I go back, and I go, ‘Clostri-Clostri-Clostri, that rings a bell. I had it in my last stool measurement.’” He pulls up an older chart on his screen. “Here is my stool measurement from January 1, 2012. And here are my bacteria. Lactobacillus and Bifidobacteria: that is what you get in, like, a yogurt and stuff like that, right? Clostridiums: you can have them from zero to four-plus. Four-plus is what they should be. And you can see I am deficient here on a number of them,” he says, pointing to low numbers on the chart. “So then I went back over time and got them plotted, and they never were above two, and now they are collapsed down to one. So it looks like I am losing. So what do Clostridia do? Because I am missing them—I am missing that service.”

  You may note the Alice in Wonderland quality of all this. Every question Larry seeks to answer raises new questions, every door he opens leads to a level of more bewildering complexity. One could easily conclude that these levels never bottom out, that the intricacy of the human body, composed of its trillions of cells—each dancing to the tune of a genetic program but also subject to random intersections with outside forces such as radiation, chemicals, and physical accidents—is for all practical purposes infinite, and hence permanently beyond our full comprehension. But Larry, with his astrophysics background, is utterly undaunted by complexity. This is the gift of the computer age: things once considered too numerous to count can now be counted. And Larry believes that questions about how the human body functions are ultimately finite.

  In his own case, Larry has zeroed in on what he bel
ieves is the specific missing bacterial component behind the immune-system malfunction causing his bowel inflammation. He’s begun a regimen of supplements to replace that component. If it doesn’t work, he’ll devise a new plan. He isn’t aiming for immortality—not yet—although as far as he is concerned, it’s not out of the question. As we develop our ability to replace broken-down body parts with bioengineered organs, and as we work toward a complete understanding of human systems and biochemistry . . . why not?

  Reflecting on Larry’s vision of a patient-centric, computer-assisted world of medical care, Dr. Welch allows: “I can conceive of this happening. But is this the model we want for good health? What does it mean to be healthy? Is it something we learn from a machine? Is it the absence of abnormality? Health is a state of mind. I don’t think constantly monitoring yourself is the right path to that state of mind. Data alone is not the answer. We went through all of this with the Human Genome Project. You heard it then: if we could just get all of this data, all of our problems would be solved. It turned out that the predictive power of mapping the genome wasn’t all that great, because there are other factors at play: the environment, behavior, and chance. Randomness has a lot to do with it.”

  And these are not the only reasons to be skeptical of Larry’s vision. Researchers will certainly continue to map the human body in ever-greater detail, enabling doctors to spot emerging illness earlier and to design drug treatments with far more precision. But in the end, how many people will want to track their bodily functions the way Larry does, even if software greatly simplifies the task? Larry says the amount of time he has spent monitoring and studying himself has grown a lot, but that it still adds up to less time each day than most Americans spend watching television. But even if that time is radically reduced by software, how many of us, understanding that our decrypted genome may reveal terrible news about our future—Alzheimer’s, crippling neuromuscular diseases, schizophrenia, and so on—will even want to know?

  When I ask Larry this question, he frowns and says, “I can’t understand that.” The very idea stumps him. To him, not wanting to know something—even bad news—just doesn’t compute. His whole life is about finding out. He’s a scientist to his core.

  “I hear it a lot, but I don’t understand it. Because whatever it is, if you suspect that you are going to have, say, Alzheimer’s within five years or ten years, then that should focus your mind on what it is you want to accomplish in the days that you have left.” Then, after a moment more thought, he adds, “And if you don’t know, those days are going to just slide by, in which you could have done something that you always meant to do.”

  He knows that the way he lives and works might seem eccentric or even a little crazy to others. “Most of my life, people have thought I was crazy at any given point,” he says. “Maybe being crazy simply means you are clear-sighted and you are looking at the fact that you are in a period of rapid change. I see the world as it will be, and of course, that is a different world than the one we live in now.”

  Larry is in a hurry to get there. He sees himself ten years down the road as someone healthy and active and strong, instead of someone struggling to manage the increasingly uncomfortable and debilitating effects of Crohn’s. As he makes his way down the supplements aisle of his Whole Foods Market, looking for a very specific assortment of probiotics with which to mix his remedial cocktail, he’s not just trying to save himself. He’s trying to save you.

  KEVIN DUTTON

  The Wisdom of Psychopaths

  FROM Scientific American

  TRAITS THAT ARE common among psychopathic serial killers—a grandiose sense of self-worth, persuasiveness, superficial charm, ruthlessness, lack of remorse, and manipulation of others—are also shared by politicians and world leaders. Individuals, in other words, running not from the police but for office. Such a profile allows those who present with these traits to do what they like when they like, completely unfazed by the social, moral, or legal consequences of their actions.

  If you are born under the right star, for example, and have power over the human mind as the moon over the sea, you might order the genocide of 100,000 Kurds and shuffle to the gallows with such arcane recalcitrance as to elicit, from even your harshest detractors, perverse, unspoken deference.

  “Do not be afraid, doctor,” said Saddam Hussein on the scaffold, moments before his execution. “This is for men.”

  If you are violent and cunning, like the real-life “Hannibal Lecter,” Robert Maudsley, you might take a fellow inmate hostage, smash his skull in, and sample his brains with a spoon as nonchalantly as if you were downing a soft-boiled egg. (Maudsley, by the way, has been cooped up in solitary confinement for the past thirty years in a bulletproof cage in the basement of Wakefield Prison in England.)

  Or if you are a brilliant neurosurgeon, ruthlessly cool and focused under pressure, you might, like the man I’ll call Dr. Geraghty, try your luck on a completely different playing field: at the remote outposts of twenty-first-century medicine, where risk blows in on 100-mile-per-hour winds and the oxygen of deliberation is thin. “I have no compassion for those whom I operate on,” he told me. “That is a luxury I simply cannot afford. In the theater I am reborn: as a cold, heartless machine, totally at one with scalpel, drill, and saw. When you’re cutting loose and cheating death high above the snowline of the brain, feelings aren’t fit for purpose. Emotion is entropy—and seriously bad for business. I’ve hunted it down to extinction over the years.”

  Geraghty is one of the UK’s top neurosurgeons—and although on one level his words send a chill down the spine, on another they make perfect sense. Deep in the ghettoes of some of the brain’s most dangerous neighborhoods, the psychopath is glimpsed as a lone and merciless predator, a solitary species of transient, deadly allure. No sooner is the word out than images of serial killers, rapists, and mad, reclusive bombers come stalking down the sidewalks of our minds.

  But what if I were to paint you a different picture? What if I were to tell you that the arsonist who burns your house down might also, in a parallel universe, be the hero most likely to brave the flaming timbers of a crumbling, blazing building to seek out, and drag out, your loved ones? Or that the kid with a knife in the shadows at the back of the movie theater might well, in years to come, be wielding a rather different kind of knife at the back of a rather different kind of theater?

  Claims like these are admittedly hard to believe. But they’re true. Psychopaths are fearless, confident, charismatic, ruthless, and focused. Yet contrary to popular belief, they are not necessarily violent. Far from its being an open-and-shut case—you’re either a psychopath or you’re not—there are, instead, inner and outer zones of the disorder: a bit like the fare zones on a subway map. There is a spectrum of psychopathy along which each of us has our place, with only a small minority of A-listers resident in the “inner city.”

  Think of psychopathic traits as the dials on a studio mixing deck. If you turn all of them to max, you’ll have a soundtrack that’s no use to anyone. But if the soundtrack is graded, and some are up higher than others—such as fearlessness, focus, lack of empathy, and mental toughness, for example—you may well have a surgeon who’s a cut above the rest.

  Of course, surgery is just one instance where psychopathic “talent” may prove advantageous. There are others. In 2009, for instance, I decided to perform my own research to determine whether, if psychopaths were really better at decoding vulnerability (as had been found in some studies), there could be applications. There had to be ways in which, rather than being a drain on society, this ability actually conferred some benefit. And there had to be ways to study it.

  Enlightenment dawned when I met a friend at the airport. We all get a bit paranoid going through customs, I mused. Even when we’re perfectly innocent. But imagine what it would feel like if we did have something to hide—and if an airport security officer were particularly good at picking up on that feeling?

  To find out,
I decided to conduct an experiment. Thirty undergraduate students took part: half of them high on the Self-Report Psychopathy Scale, and half of them low. There were also five “associates.” The students’ job was easy. They had to sit in a classroom and observe the associates’ movements as they entered through one door and exited through another, traversing en route a small, elevated stage. But there was a catch. They also had to note who was “guilty”: Which one of the five was concealing a scarlet handkerchief?

  To raise the stakes and give the observers something to “go on,” the associate with the handkerchief was handed £100. If the jury decided that he was the guilty party—if, when the votes were counted, he came out on top—then he had to hand it back. If, on the other hand, he got away with it and the finger of suspicion fell heavier on one of the others, he would stand to be rewarded. He would instead get to keep the £100.

  Which of the students would make the better “customs officers”? Would the psychopaths’ predatory instincts prove reliable? Or would their nose for vulnerability let them down?

  More than 70 percent of those who scored high on the Self-Report Psychopathy Scale correctly picked out the handkerchief-smuggling associate, compared with just 30 percent of the low scorers. Zeroing in on weakness may well be part of a serial killer’s tool kit. But it may also come in handy at the airport.

  Trolleyology

  Joshua Greene, a psychologist at Harvard University, has observed how psychopaths unscramble moral dilemmas. As I described in my 2011 book, Split-Second Persuasion, he has stumbled on something interesting. Far from being uniform, empathy is schizophrenic. There are two distinct varieties: hot and cold.

 

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