Tomorrowland

by Kotler, Steven

  After this waiting period, donors start producing. “We see them twice a week for semen, we see them once every three months for an updated battery of STD tests,” Rothman says. “We get to know them pretty well along the way.”

  But the major problem facing the industry right now isn’t how well sperm banks get to know their donors — it’s how well prospective parents get to know their donors.

  4.

  Here in the twenty-first century, we shop for kids via catalog — “donor catalog” to be exact. These catalogs are thick, usually including a description of donor eye color, ethnicity, and education level, a psychological profile, personal essays, and even audio interviews. Occasionally, adult photos are included and California Cryobank has just added baby pictures as well. But the one thing prospective buyers are never permitted to know is the donor’s name.

  Donor anonymity is the bedrock of the business and, as a result, as Jane Mattes, a New York psychotherapist and founder of Single Mothers by Choice, an organization that represents the fastest-growing group to utilize frozen sperm, says, “the most crucial issue facing the industry today.”

  While the industry maintains continual contact with its donors during the sperm-collection phase, California Cryobank and others have no way to keep track of donors after their tour of duty is done. Illness is the problem. There are plenty of diseases that don’t manifest until later in life, yet most donors are college students who have yet to get sick. Furthermore, though most sperm banks are rigorous in their predonation screenings, many donors don’t know their own genetic history. Others lie to conceal it.

  Add in the fact that nobody demands that cryobanks stay in contact with donors; that banks don’t have to tell new clients about health concerns among donors’ prior children or release any follow-up medical information about a donor; that, traditionally, sperm banks destroy donor records to preserve anonymity after the bank is done selling their sperm, and — as the saying goes — you have the makings of a quagmire.

  This quagmire has led to problems, like those facing Brittany Johnson. In 1988, Diane and Ronald Johnson used California Cryobank sperm — from a man known only as Donor 276 — to conceive their daughter Brittany. The problem with 276’s sperm was an exceptionally rare kidney disorder known as autosomal dominant polycystic kidney disease, a late-onset ailment that typically doesn’t appear until after age forty — but one that usually requires a kidney transplant by age fifty. It is possible that Donor 276 didn’t know he was a carrier (though this seems unlikely, since his grandmother died from it and his mother and aunt also suffered from it). Either way, when Brittany got sick at age six, she became what the media dubbed the “test case for sperm gone wrong.”

  It became a nasty fight. The Johnsons alleged that California Cryobank knew the truth about Donor 276 — though Rothman strenuously denies this — and went out of its way to conceal it. And Brittany may not be the only sick child around. Between 1984 and 1988, Donor 276 made $11,200 for himself by donating over 300 specimens, and court documents suggest the bank sold nearly 1,500 vials of Donor 276 sperm to an unknown number of women before being taken off the market in 1991.

  While the facts of this case remain murky (it was settled out of court in 2003 and some records remain sealed), the resulting hoopla brought similar problems to light. There is the widely reported story of Donor 1084 at Fairfax Cryobank in Virginia, the second largest cryobank in America, whose sperm carries a rare platelet disease and has resulted in a half dozen sick children up and down the East Coast. Also at Fairfax, Donor 2148 carried a rare genetic immune disorder that has already infected one of Donor 2148’s twenty-three known children. Then there’s Donor F827, from International Cryogenics in Michigan, who fathered somewhere between five and eleven children and all with a rare blood disease that leaves carriers at serious risk for leukemia.

  And this list goes on and on.

  The answer that many are pushing for is to ban donor anonymity. But this brings problems of its own. In 1984, Sweden outlawed anonymity, and so severe was the drop in potential donors that Swedish women began traveling to Denmark for sperm, giving rise to what is now known as reproductive tourism. And the same thing happened in New Zealand. In 2005, when England outlawed anonymity, donor numbers dropped by 84 percent. On an island of 22 million men, fewer than 200 are now willing to bank their sperm. After the law’s passage, Clare Brown, chief executive of the Infertility Network UK, told reporters, “Clinics across the country are having to close because there is a shortage of donor sperm — and that constitutes a crisis.”

  In the US, that crisis is following an even stranger path. In 2005, while England was banning donor anonymity, a donor sperm–born teenager named Ryan Kramer decided he wanted to know his father. So he swabbed his cheek and sent the DNA sample to an online genealogy testing service and soon became the first person in history to use Internet DNA services to track down a lost parent.

  There were two immediate reactions to Ryan Kramer’s quest — the first by the sperm-banking industry. “We removed a bunch of information from our donor profiles,” says Cappy Rothman, “making it a lot harder for people like Ryan to track down their fathers.” The second was the creation of a number of organizations dedicated to chipping away at donor anonymity and a number intent on washing it away completely.

  In the chipping-away category is the Donor-Sibling Registry, founded in 2000 by Ryan Kramer’s mother, Wendy. “I started the website as a Yahoo message board,” she says, “to give these donor kids a place to go to try and find their half brothers and half sisters.” For the first two years, the registry totaled thirty-seven members; then word started to spread. By 2003, the site’s popularity had grown so much that Wendy removed it from Yahoo and created a dedicated site (donorsiblingregistry.com), which now has 8,500 members.

  In the washing-away category are projects like those started by Dr. Kirk Maxey, a former sperm donor and founder of the Donor Semen Archive, the Donor X Project and the Donor Y Project, a series of endeavors that use genetic markers to track both donors and the resulting children, with hopes of forcing the industry’s hand.

  “I think that gamete [egg and sperm] banking is by its very nature a nonprofit activity,” says Maxey. “It is only a misguided perversion that has allowed it to become an industry, and that industry is the only strong advocate for donor anonymity. The malfeasance perpetrated under the guise of donor anonymity is what we are slowly but steadily bringing to light through genetic testing.”

  In an interview with ABC News, Maxey said he began donating his own sperm in the 1980s, and guesstimates that over the course of sixteen years he may have produced more than 200 children. While Maxey uses these figures to paint a disturbing picture of the industry he now opposes, there is no way to verify his claims.

  Dr. Rothman defends the industry, saying, “We’ve been trying to create an industrywide donor tracking system, but it’s expensive and we’re trying to get other sperm banks to buy in as well. Either way, we’re hoping to have something in place within a year or two.”

  But there’s an important caveat in Rothman’s avowed support for a donor tracking system, which would put an end to the destruction of former donors’ records: Their names would remain anonymous to parents. Donor tracking would be used only internally to allow gamete banks to keep track of how often and where donors sell their sperm and eggs, and, as they age, to monitor donor health issues that aren’t currently tracked.

  As such, this form of donor tracking would be the middle ground between current practices and an outright ban on anonymity. Many industry watchdogs feel this tracking system doesn’t go far enough, while others feel Rothman’s sentiments — despite the fact that he publicly applauded Wendy Kramer’s efforts and initiated talks to partner with her enterprise (as of yet inconclusive) — are mere lip service. Whatever the case, when it comes to donor tracking, California Cryobank may be sailing alone.

  Recently, William Jaeger, vice president of Genetics and
IVF Institute in Virginia, another of the nation’s biggest banks, told the New York Times that mandatory donor-identity disclosure “would devastate the industry.” Kramer has found similar attitudes elsewhere. “I’ve spoken to the directors of all the major sperm banks and they don’t all think like Cappy,” she says. “Even though my site is based on mutual consent, Northwest Andrology [one of the other major players] is very much against what I do.”

  Kramer contends that Northwest Andrology — whose website features a photo of a fat wad of $100 bills and touts the news that donors earn up to $16,000 — is so opposed to unveiling the donor names that “they’ve threatened donors on my site, making them take down their information. They’re hell-bent on preserving anonymity.”

  5.

  While anonymity is a major issue, industry watchdogs maintain that hidden beneath it is a far more insidious problem: incest. There is a growing concern that sooner or later two donor siblings are going to meet and mate without realizing that they share the same father or, in the case of egg donations, mother. “No one on the sperm-bank side wants to talk about it,” says Kramer, “but there are over one million donor children in the world, and I know of several cases where unknowing siblings have ended up going to college together and having the same groups of friends. The industry says accidental incest is a statistical impossibility, but from what I’ve seen, it’s only a matter of time.”

  This is no small issue. Simply put, incest is bad for the gene pool. Sleep with your brothers and sisters and mutations arise. If this pattern of intimate relations with intimate relations continues for more than a few generations, pregnancy becomes impossible. The line dies out. For this reason, in 1910, anthropologist James Frazer demonstrated that the incest taboo was universal, an idea extended by anthropologist Claude Lévi-Strauss, who felt that the incest taboo drove us to procreate with people outside of our own family and tribe — meaning this fear is actually the fundamental building block of society.

  To protect this building block, some countries have laws limiting the number of women who can receive sperm from a single donor. Britain sets their legal limit at ten, Denmark at twenty-five. In the US, there are guidelines. The American Association of Reproductive Medicine suggests that a single donor sire no more than twenty-five children within an urban area with a population of 800,000, but — as there’s nothing stopping a man from donating sperm at LA’s California Cryobank and then traveling a few miles down the freeway and making another donation at Pasadena’s Pacific Reproductive Services — these guidelines are hard to enforce.

  Instead, the banks police their own limits internally. California Cryogenics, for example, draws its line at twenty kids per donor, but only 40 percent of the women who buy frozen sperm report back to the Cryobank with news of a live birth — yet they don’t cap sperm sales until those live births are reported. And, because certain — think blond-haired, blue-eyed — donors are extremely popular and not all pregnancies take, banks often sell the same sperm to more than the recommended number of buyers. Furthermore, because most families order sperm for their immediate needs and then pay a storage fee to hold more in reserve for future use, there’s no way to enforce the limits.

  “No sperm bank knows how many children are born to specific donors,” says Kramer. “They don’t know who these kids are or where they are. There’s no accurate record keeping.”

  More alarming is the charge that sperm banks have been intentionally underplaying how many kids have been sired by particular donors. The most egregious example of this is Dr. Cecil Jacobson, who ran a reproductive genetics center in Tysons Corner, Virginia. Instead of using donor sperm, Jacobson substituted his own. When he was caught, investigators found seven children sired by the doctor and — because mothers refused to submit their kids for DNA testing — seventy-five other possibilities.

  Talking about this problem, San Francisco’s Chloe Ohme, both a midwife and the first person in history to impregnate herself using Internet-found, mail-order sperm, says, “I’ve been at gatherings of single mothers and people suddenly realize their kids look a little too alike and begin comparing donor numbers and, sure enough, they match.” And that’s nothing compared to what Kramer noticed after she opened her donor-sibling registry for business. “Very quickly,” says Kramer, “we found donors on the website with thirty and forty and fifty kids.”

  Unfortunately, no one really knows the scope of the problem. One of the only times the issue of sibling incest and sperm banking has been studied was in 1984, by the Law Reform Commission of New South Wales, Australia. The Commission found no danger of incest among donor offspring in the US, but based this determination on annual, nationwide, assisted-reproduction birthrates of 10,000. These days, some 30,000 women a year use California Cryobank’s services — and that’s only one bank out of thousands.

  Not surprisingly, it’s religious organizations who are most vocal about this issue. The Catholic Church feels that any form of assisted reproduction threatens the sacred covenant between man and woman, often citing the dangers of incest among its reasons. The Southern Baptist Church has also begun looking into the dangers of accidental incest. Dr. Richard Land, president of the Ethics and Religious Liberty Commission for the Southern Baptist Convention and head of the organization’s public policy arm, says, “We don’t share the Catholic prohibition against AIH (artificial insemination by husband), but forget the religious implications. There are good medical reasons why all states have laws against incest. It produces very real medical dangers. In the past twenty years, we’ve learned enough about the tyranny of biology to know that, for the most part, the nature-versus-nurture argument is dead. Nature always wins. Which means incest is a real concern, and the more children who are the product of sperm banks, the more this concern becomes a problem for everyone.”

  Rothman disagrees. “Incest isn’t an issue. Not only is it statistically improbable, but go back 300 years and just about all of us lived in tiny villages. There was no public transit. Everyone was related to everyone else because there was no one else around to marry. We’re all descendants of incest. Secondly, from a medical perspective, you’re talking about the danger of one generation of incest — even if that happens, the chances of something going wrong are minute.”

  Still, even if incest isn’t an issue, it remains a fundamental taboo — so the problem doesn’t seem likely to go away.

  6.

  The King of Sperm has a corner office, exotically decorated. Perched by the window is a small statue of a man with, as is appropriate, enormous testicles. His balls, literally, hang to the floor. Above the statue, hanging from the ceiling, is a sizable replica of the solar system — a Starship Enterprise model positioned dead center. This is also appropriate.

  “I’m interested in the frontiers of technology and humanity,” Rothman says. “And I know there are dangers in sperm banking. I reread Brave New World once every three years. But I also know that infertility is the kind of problem that ruins lives. I only wish the government would recognize this fact as well.”

  What Rothman means is that unless the industry finds a quick way to address donor anonymity and its downstream concerns (incest among them), it’s only a matter of time before the federal government gets further involved, and that’s exactly what the industry most fears. “The Food and Drug Administration has become the most onerous obstacle involved in reproduction right now,” says Rothman. “They’re unaware of the field and — especially in the Bush years — are taking orders from an administration — which has time and again proved themselves irresponsible with science.”

  Take the 2001 FDA ruling that banned the importation of European sperm on the grounds that it might be contaminated with mad cow disease. “The problem,” says Rothman, “is that mad cow disease is a prion disease — it’s not sexually transmittable. The only way someone could get it is to eat the frozen sperm.”

  Nor is this an isolated incident. In 2005, because of the dangers of HIV transmission via
blood transfusions, the FDA created Donor Eligibility and Determination Labeling — a set of rules pertaining to the transference of biological material from one person to the next. Sperm banking and in vitro fertilization labs must adhere to these rules, yet there has never been a case of anyone getting HIV from the transfer of reproductive material. Concurrently, they also banned sperm banks from using the sperm of any man who has had “gay sex” in the past five years — even though, again, there is no instance of AIDS being passed via purchased sperm.

  As Dr. Barry Behr, Stanford University associate professor of obstetrics and gynecology, and director of Stanford’s in vitro fertilization lab, says: “The government has put unreasonable and nonsensical demands on reproductive clinics.”

  Among those nonsensical demands, Behr points to a California law stating that all couples considering assisted childbirth must be screened for diseases like HIV, HDLV, syphilis, hepatitis, and rubella. Save HIV and HDLV, all of these results can be ignored or waived — meaning one partner can sign a form saying they understand the dangers and want to go ahead anyway — so infected material is occasionally stored at cryobanks. “The FDA demands that this material be held in a completely separate ‘biohazard’ location in the cryotank,” says Behr. “This means we need more cryotanks, a separate labeling system, and a ton more paperwork. All of it is unnecessary. What they don’t get is that every sample in the tank is still sharing the same liquid nitrogen. It’s like making people with a cough live on the same street, but using only one school bus to pick up the entire neighborhood.”

  “Every time the government passes another law,” says Rothman, “all they’re doing is restricting women’s reproductive freedom. I don’t think the government belongs in our bedrooms. I understand that if the industry doesn’t establish a donor registry, this is what’s coming. But I think the American public should rise up against it. By letting the FDA tell you whose sperm you can’t use, they’re in essence telling you whose sperm you have to use. And I don’t think we want the federal government deciding what kinds of kids the American public should be allowed to have.”