By Besha Rodell
By Patrick Range McDonald
By Michael Goldstein
By Dennis Romero
By Sarah Fenske
By Matthew Mullins
By Patrick Range McDonald
By LA Weekly
Add in the fact that there is no government body demanding the banks stay in contact with donors; that cryobanks are not legally obligated to inform new clients about health concerns among any of a donor’s prior children or to 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, a Santa Barbara couple, used California Cryobank sperm from a man known only as “Donor 276” to conceive their daughter Brittany. Between 1984 and 1988, Donor 276 made $11,200 for himself by donating over 300 specimens to the Cryobank.
While there is no way to know for certain, court documents (Diane Johnson v. California Cryobank) suggest that Cryobank sold nearly 1,500 vials of Donor 276 sperm to an unknown number of women in unknown locations before Cryobank restricted the sale of his sperm in 1991.
The problem with 276’s sperm was an exceptionally rare kidney disorder known as autosomal dominant polycystic kidney disease (ADPKD). ADPKD is a late-onset disease, typically not appearing until after 40 years of age but usually requiring a kidney transplant by age 50. 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 in California at age 6, she was well on her way to becoming what the media dubbed “the test case for sperm gone wrong.”
The problem, so the Johnsons alleged, was that California Cryobank knew the truth about Donor 276 — though Rothman strenuously denies this — and that the sperm bank went out of its way to conceal it.
While the facts about this case remain somewhat murky (it was settled out of court in 2003, so some records remain sealed), the resulting hoopla brought other, similar concerns to light. There is the widely reported case 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 23 of Donor 2148’s known children — and still Fairfax refuses to admit there is a problem. Not too long ago, the Journal of Pediatrics reported that Donor F827, from International Cryogenics in Michigan, fathered somewhere between five and 11 children, all with a rare blood disease that leaves carriers at serious risk for leukemia. And this list goes on and on.
The easy answer that many are pushing for is a ban on donor anonymity. But as other countries can attest, 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.” The same thing happened in New Zealand.
In 2005, England passed a national amendment outlawing donor anonymity. In the years leading up to the law’s passage, donor numbers dropped by 84 percent. On an island of 22 million men, less 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 U.S., 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 response was the creation of a number of organizations dedicated to chipping away or washing away donor anonymity. In the chipping-away category is the “Donor-Sibling Registry,” founded in 2000 by Ryan Kramer’s mother, Wendy Kramer, of Nederland, Colorado. “I started the Web site as a Yahoo message board,” says Kramer, “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 site totaled 37 members, then word spread. By 2003, the registry’s popularity had grown so much that Wendy removed it from Yahoo and created a dedicated site (donorsiblingregistry.com). Today, there are 8,500 members and no end in sight.
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 uses genetic markers to track both donors and the resulting children, with hopes of forcing the industry to end the practice of donor anonymity.