Here Is a Human Being Read online

  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,5 blogging for the Huffington Post,6 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.7 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.”8

  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.'”9 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.10

  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.”11

  “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.”12

  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).13 His self-published book, written under the pseudonym “Sandman,” included short stories and essays set in Wyoming, Utah, and New Orleans.14 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.15 He described his motivations as “50 percent altruism, 25 percent monetary, and 25 percent [something else].”16

  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.”17

  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.”18

  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.19

  Maxey admitted that he took a lot of things on faith. The first test-tube baby, Louise Brown, had been born in 1978,20 and in the 1980s in vitro fertilization was a nascent growth industry.21 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.”22 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.23 During this time there was also a technical breakthrough: the ability to freeze sperm for later use.24 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.”25 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.”26

  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.27 Later, he wondered about whether he had any biological half siblings.28 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.29 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.30

  “After registering on the site,” said Maxey, “it all sort of came back. I said to myself, ‘You know, that was a mess—what were those guys really doing?'” With the help of an attorney, Maxey procured seven years’ worth of his records from the clinic.31 These were the source of more revelations.

  He found out that his donations were split, sometimes by as much as 8:1. The benign explanation was that this was a way to make donations go further, to share the wealth, as it were. But the real rationale, said Maxey, was more sinister. The samples were being diluted to the point that they were equivalent to an infertile ejaculate. By diluting a sample of 400 million spermatozoa into eight or ten samples, the odds were less than fifty-fifty that a woman would get pregnant. On the other hand, it clearly raised the odds that she would spend another five hundred dollars for an additional vial of sperm, and perhaps another one after that. Maxey believes this is still standard practice in the sperm banking industry. “The most dissatisfied customer is actually the ideal customer.”32

  What about fertility research? Maxey found out that none of his samples went for this purpose; all were used for insemination.

  Then came the math. At 100 percent fertility, the clinic’s records suggested, Maxey would have produced about 2,600 offspring. Factoring in the dilutions and the randomness of successful fertilization, he suspected the number fell by a factor of ten. “But it’s still hundreds,” he admitted, a bit incredulous even after two decades. What disturbed him more was that the clinic had no idea as to how many children were conceived with his sperm, where they lived, and whether they were healthy.33

  Which brings us to his unbridled enthusiasm for making his genome public. He wanted his biological children to be able to contact not only each other but him. They could, if they liked, see what he had in his cells and what they may have inherited without having to resort to any of the elaborate detective work undertaken by the teenage Ryan Kramer. To that end he established the Cayman Biomedical Research Institute (“CaBRI”) and its Donor Gamete Archive, which Maxey called first and foremost “a nonprofit storage service.”34 For a fee CaBRI would store 1) viable semen samples that had been purchased by women for artificial insemination; 2) the empty vials that presumably still contained enough residual sample for genetic testing; and 3) cheek swabs of women who had undergone or would undergo AI as well as swabs of their relatives.35

  CaBRI uses the samples for genetic testing and would test for whatever traits a sample’s “rightful owner” (the woman who purchased the sperm sample) requested. It would not try to identify the donor specifically, but the institute pools height, weight, ethnicity, and whatever other information has been obtained about a specific donor and shares it with mothers who have used that donor.36

  For Maxey, CaBRI was all about trying to reform a sperm banking industry that, at least until recently,37 appeared to answer to no one. The American Association of Tissue Banks, for example, issued voluntary guidelines that encourage sample traceability; in November 2009 a search found eight sperm banks that were AATB-accredited for both storage and distribution.38 Much like human genetic and genomic research, the sperm banking industry had spent decades with donor anonymity at its ethical foundation. By tradition the donor is not known to the recipient or the recipient’s children. After Ryan Kramer found his biological father, California Cryobank, the largest sperm bank in the world, immediately removed a host of potentially identifying information from its donor profiles in order to make it harder for future Ryan Kramers.39 And some bioethicists complained that what Maxey’s Donor Gamete Archive was doing was not kosher. “Surreptitiously keeping samples in a biobank without explicit consent is unethical,” the University of Pennsylvania’s Arthur Caplan told New Scientist.40

  But the sperm banks’ main argument for preserving anonymity was that without it, no one would donate and sperm banking as we know it would cease to be. They pointed to the United Kingdom, where the Human Fertilisation & Embryology Authority collected data on donor-conceived births, limited use of a single donated sample to a maximum of ten families, and kept a registry of donor data that offspring could access at age eighteen or beyond. Reportedly there were now less than two hundred British men willing to bank their sperm, while Sweden’s sperm banking industry suffered a similar decline.41 On the other hand, this change had served to internationalize the donor conception business. Following their countries’ rejection of donor anonymity, both English and Swedish women began traveling to neighboring Denmark on “fertility vacations.”42 And Copenhagen might be just the first stop. “In India there are lots of fertility clinics willing to do any IVF procedure you want, no questions asked,” Kirk Maxey told me. “So you order your semen in Denmark, have it sent to India, see the Taj Mahal, and if you have no functioning ovaries yourself, you secure a donor egg and come back pregnant with a half-Danish-half-Indian baby. I know an Englishwoman who did exactly that.”43

  Sperm banks have also had to contend with litigation, some of it resulting directly from their absolutist positions on anonymity and failure to secure and/or track complete donor medical histories. In 1988, a Santa Barbara couple, the Johnsons, used a California Cryobank sample from “Donor 276” to conceive their daughter Brittany, who at age six developed autosomal dominant polycystic kidney disease, a genetic disorder that usually appears later in life but typically requires a kidney transplant by age fifty. The Johnsons had no family history of ADPKD, but Donor 276 did: his grandmother, aunt, and mother all suffered from it. In all,

  nearly 1,500 vials of Donor 276's sperm were sold by California Cryobank to an unknown number of women in unknown locations before the sperm bank pulled the sample in 1991. The Johnsons sued California Cryobank for professional negligence, fraud, and breach of contract, alleging that California Cryobank knew that Donor 276 was at high risk for ADPKD; the case was settled out of court in 2003.44

  Recently the sperm banks have shown a willingness to give a little on the anonymity issue, which I suspect stems from the developments I’ve discussed: the trend toward outsourcing, the ingenuity of and technology available to the Ryan Kramers of the world, the emergence of the Donor Sibling Registry and the Donor Gamete Archive, and the ongoing threat of costly litigation. In 2008, California Cryobank teamed with two other large sperm banks to propose the first national registry of sperm and egg donors.45 But by 2010, the details—name or just donor ID number? Access for whom and at what cost?—had yet to be ironed out. I had my doubts as to whether they ever would be.

  I don’t have any data to back it up, but I don’t think it’s much of a stretch to say that Maxey was not a typical sperm donor. He had and has strong proprietary feelings for his biological children: “[T]hey’re my kids,” he told PBS in 2006. “They’re kids that I adopted out when they were single cells.”46 Thus the Donor Gamete Archive is partly self-serving, and I mean that in the best way. And his book, Pig Blood, was written not to achieve literary stardom, but as another way to reach the hundreds of offspring carrying Maxey chromosomes, most of whom were believed to reside within 150 miles of Ann Arbor, Michigan. Pig Blood recounts his time working on ranches and in laboratories, and includes pointed essays about evolution (it’s still going on) and climate change (it’s happening but we’ll be fine). The back cover says:

  One day in the spring of 2006, he [Maxey] received an email from a young woman in a nearby town who was just about to graduate from high school. It said, “I think you are my biological fath
er.” … As this unusual friendship developed, he learned that they both spoke French, enjoyed writing, and shared a weakness for a certain soft drink… . [When her dozens of half siblings came to know the circumstances of their conception], they would come searching for their genetic roots. They would want to know something about the man who helped to give them life.47

  By the end of 2009, Maxey had found just two biological offspring.48 “That means that I will die before contacting more than 90 percent of them. That was the reason I wrote my book: so that I could take possession of my own identity, rather than have Google, Fox News and various websites do it for me.”49

  He said that the common perception of the sperm donor is an ugly one: “A testosterone-sodden college kid with his hands perpetually down around his groin, ejaculating in paper cups and then heading home with a couple of six-packs to share his fortunes with his roommates.”50

  He believed that this stereotype could and should be reversed and that genomics would be instrumental in doing so. In the near future, potential donors would undergo full genome sequencing. Those carrying deadly single-gene disorders would be culled from the donor pool much as the Red Cross selects out HIV-positive individuals. The elimination of those without a “Clean Genome” would shrink the donor pool by half. Of those remaining, 90 percent would be excluded based on inadequate sperm count and/or inability of their samples to withstand the freezethaw cycle. “What’s left can only be described as an elite,” Kirk wrote in an email. “And they should be treated that way. Their compensation should be sufficient to require only a modest second source of income. Remember: the scheduling for twice-weekly donations leaves only one night per week for regular sex—that’s something of a sacrifice (well, I can only speak for myself $$). I think donors should be thought of more or less like monks.”51