Here Is a Human Being (13 page)

E
sther Dyson (aka PGP Subject #3) emailed—all small letters, no punctuation, signs her name “esthr"—to ask if I could come early. But when I showed up to the Washington conference room of the National Endowment for Democracy, where she’d decamped for the moment, another guy was already there to see her. A few months earlier she’d sent me her travel schedule: Moscow, Brussels, London, New York, Aspen, Washington—and that was just June. No wonder she had no land telephone line—it would atrophy from disuse. As a consultant to the air taxi business, she was ferried all over the globe on someone else’s nickel, which made her life seem like some kind of
Condé Nast Travel/Wired
mashup of “Where’s Waldo?” If I wanted to know where she was, she suggested I follow her on Dopplr, whatever that was.

She had offered advice to countless Web start-ups, to social networking sites, to search engines, to marketers and branders, and to the occasional prime minister. I went on her Flickr stream (why so much disdain for the lowercase e?) and looked at photo after photo of exotic locales and famous people from the virtual land of Web 2.0 Capitalism: Peter Gabriel, Sergey Brin, Rupert Murdoch, Thabo Mbeki, Stewart Brand, Neal Stephenson, and Esther herself lounging with some wild cheetahs in Botswana. She hosted an annual gathering for those interested in the emerging markets for private air and commercial space travel. And she was chosen to be the lone outsider to sit on the board of directors of 23andMe.
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Two decades after the dawn of the Internet, four-feet, eleven-inch Esther Dyson was still the Doyenne of the Digerati, and increasingly, the Genomerati.

I tried to imagine what she was like as a child, with a world-famous physicist for a dad (Freeman Dyson) and an eminent mathematician (Verena Huber) for a mom. A few times a year, dozens of organizations would have their orderly universe disrupted by fifty-something Esther, ever the iconoclast, in a black short-cut jacket, scruffy gym shoes, her hair pulled back and streaked with garish colors, stickers covering her laptop commemorating all of the far-off places she’d been despite never having learned to drive.

I waited for her in the library in the office building on F Street N.W. I had no idea what the National Endowment for Democracy was, but I was pretty sure it was doing something important and paradigm-shifting or else Esther wouldn’t be bothered. NED’s mission, it turned out, was to foster democratic institutions all over the world.
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Esther was particularly drawn to Eastern Europe and its burgeoning post–Cold War markets. “It’s like a nest,” she said. “In destruction lies opportunity.”
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NED was populated by smiling faces, but the place made the Library of Congress seem like a dance party; it was downright funereal, which made Esther stand out. And maybe that was the point: she didn’t care about their rules or their culture—she was as honest with them as she was with herself. Therein lay her “value proposition.”

In a profile of her from 1996, when the World Wide Web was neither worldly nor wide, she said: “There’s going to be so much more content out there, some of it really crappy, some of it not. It’s going to be a lot harder to get people’s attention, and there will no longer be a premium on [the] distribution mechanism, which was based on the shortage of channels. Suddenly there are millions and millions of channels… .”
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Had they only asked her, the record companies, the newspapers, and the television networks might have saved themselves a lot of heartache. And indeed, perhaps the “millions of channels carrying dubious content” model was applicable to human genomes as well.

But even if that weren’t true, there would be nothing in Esther’s genome that would give her pause. Just like Halamka. And George. And Stan Lapidus. These people woke up every morning with their swords drawn, ready to charge up the hill, indefatigable, relentless. In Esther’s case that might mean waking up for an early-morning swim in Kuala Lumpur or Bombay or Monte Carlo or Frankfurt or Sydney. I envied her her surefooted place atop Maslow’s pyramid. I took comfort in knowing that when we discovered there were things written in our cells that we didn’t actually want to know, or this whole genome thing turned out to be a mirage, then people like Esther would be there to absorb the blows. Scientists and ethicists might have dismissed the notion of hypereducated, rich, healthy people getting their genomes sequenced first, but part of me was relieved at the prospect.

Well over a year before we got any actual sequence data, Esther was appearing on
Charlie Rose,
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blogging for the Huffington Post,
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and writing op-eds in the
Wall Street Journal
explaining the PGP, heralding the new genetics, scoffing at those who feared it, and radiating sanguinity.
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Decoding and publishing genomes, and tying that information into the medical system, seemed to her a natural extension of the digital zeitgeist.

“There are two big places where information technology should have helped and hasn’t,” she told me. “Health care and education.” She recalled a Renaissance Weekend [an intellectual retreat made famous by the Clintons] session she attended with various luminaries in health care, from insurance company executives to celebrity surgeons. They presented their uninspired and well-rehearsed shticks to a smattering of attendees. Their lack of an action plan gnawed at Esther. “They were caring people, they were lucid about the problems, they were well meaning. But it was the most depressing meeting I’ve ever been to. In my world you would have had four VCs and five schemes to revolutionize health care and resolve the obstacles.”
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She kept getting more and more interested in the subject, which led her to George Church. “I thought, ‘Boy, this guy’s really interesting but I don’t know what to do with him.'”
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She organized a conference on personal health records, invited him to speak, and then volunteered for the PGP; she soon became Participant #3.

Before the end of the second PGP-10 gathering, Esther had to leave for Houston. She was scheduled for a colonoscopy, part of the medical exam for aspiring astronauts. From there she would go to Russia to complete her training.
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In the summer of 2006, the Church-Wu family drove west from Boston to the Great Lakes. Their tour took them through Buffalo, Toronto, Ohio, Michigan, and back through New Jersey and New York. Instigated by Ting and Marie, the journey was an opportunity to meet some of the then-150 people who had put their names in the queue to join the PGP-10 (within two years, the waiting list would reach 5,000; by late 2009, more than 12,000). Even in the early going, George had fielded dozens of phone calls from strangers, many of whom had little if any understanding of the science. “There had been a lot of discussion about who was going to volunteer and why,” Ting said. “We thought maybe it’d be nice to meet them and talk to them. We decided the trip would not be to gather DNA but to gather opinions.”
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“Up until then,” fifteen-year-old Marie told me, “all I heard were scientists talking about it in these terms that I couldn’t quite understand. I got a lot of it, but it never really seemed that … personal? And then I met random people in little towns who understood it more like I understood it. And they had the most interesting genes! It seemed a lot more real to me than just my dad talking about getting his genome done.”
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Among the random people with interesting genes was Kirk Maxey,

a trained physician who founded and runs Cayman Chemical, a leading research supplier of enzymes, antibodies, and the like. He is five feet ten, 155 pounds, blue eyes, right-handed, and his ABO blood type is A+ (PGP profiles come in handy).
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His self-published book, written under the pseudonym “Sandman,” included short stories and essays set in Wyoming, Utah, and New Orleans.
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But to listen to him speak was to hear a gentle voice whose accent betrayed its Michigan roots, which were quite deep. As was his legacy.

Kirk Maxey may have fathered as many as four hundred biological children.

When he was a medical student in the late 1970s and early ‘80s, Maxey’s wife thought he would make an excellent sperm donor. And so he became a regular.
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He described his motivations as “50 percent altruism, 25 percent monetary, and 25 percent [something else].”
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In those days, the transaction was a casual one. “At that time the OBGYN or the fertility practitioner just recruited his tennis partner or his cardiology friend from across the hall,” Maxey remembered. “He personally vouched for their general healthiness simply by ‘inspecting’ them. There was really almost no medical aspect to being a donor in those days, just a twenty-dollar bill and a little brown box for your jar.”
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When he started donating at the University of Michigan, Maxey signed a one-paragraph document whose main purpose was to obligate the donor to report any new sexually transmitted diseases he contracted. “Basically I promised that if something turned blue and fell off then I would tell them.”
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The form also guaranteed anonymity. In his youthful naïveté, Maxey thought this meant the sperm bank wouldn’t tell his med school buddies what he was up to. In fact, it meant that he would remain unidentified to the couples who availed themselves of his sperm, and they in turn would remain unknown to him.
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Maxey admitted that he took a lot of things on faith. The first test-tube baby, Louise Brown, had been born in 1978,
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and in the 1980s in vitro fertilization was a nascent growth industry.
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Maxey was told that in addition to being used to help infertile couples, his sperm would also be instrumental in perfecting IVF technology. But he never asked how much of his donations actually went toward research.

Like a boxer before a fight, Maxey would have to abstain from sex prior to his donations. But like a porn star, he also had to produce on demand. While the sperm bank would often call two days prior to the date it needed his services, there were times when he would be summoned in the middle of his gross anatomy laboratory—a recipient was ovulating
right now.
Thus he once had to produce a sample while driving. Although he’s told the story many times, with a faint smile Maxey described the process of masturbating into a cup while behind the wheel of a moving automobile as “risky and fairly difficult to do.”
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And you thought texting was dangerous.

As time passed, the sperm banking industry became somewhat less free and easy, particularly in the aftermath of the AIDS epidemic.
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During this time there was also a technical breakthrough: the ability to freeze sperm for later use.
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For Maxey the urgent phone calls stopped.

But his career as a donor continued, at least until what he called a “really unpleasant and still kind of undefined event.”
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Despite its cold, clinical, anonymous protocols and dirty magazines in the bathroom, sperm donation is an intimate undertaking. Donors often get to know the technicians, mostly female nurses, quite well. With HIV testing came even more intimacy in the form of regular urethral swabs. One of the technicians with whom Maxey dealt regularly had, he suspected, developed a crush on him. He did not give it much thought until she called him one day and told him she had used one of his samples to impregnate herself.

Maxey was shocked at this breach of protocol and what it said about how the sperm bank was doing business. He realized that the clinic had no reliable way of tracking its samples. The physician in charge tried to reassure Maxey that the amorous technician had been fired. “And he said something I always found curious,” Maxey told me. “He said, ‘We made sure she had an abortion.’ I don’t see how they did that, though I didn’t question it at the time. I didn’t want to talk about it. To this day I don’t know if she was ever really pregnant or if she eventually had a child.”
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For a long time Maxey tried to forget his fourteen-year tenure as a sperm donor. Eventually he learned about Wendy Kramer, whose son Ryan was donor-conceived (Wendy was divorced within months after Ryan was born). From age two, Ryan was curious about his biological father.
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Later, he wondered about whether he had any biological half siblings.
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Consequently mother and son developed the Donor Sibling Registry, which allowed donor-conceived children to search for relatives by sperm bank name and donor number.
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At age fifteen Ryan used a combination of a Y-chromosome DNA test and some clever genealogical searching (a relative of his biological father had taken the same test and posted a large genealogy online) to identify his “anonymous” donor father.
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