Traditionally, the identities of egg and sperm donors have been tightly guarded secrets, numbers with no names attached, making it difficult for their biological offspring to ever make contact. Today, that changes as Washington becomes the first state to chip away at that anonymity, with a controversial new law that guarantees children conceived with gametes from Washington sperm banks and egg donation agencies access — when they’re 18 — to their donors’ medical histories and their full names— unless the donors specifically opt out of being identified.
Although Washington doesn’t go as far as Sweden, Austria or the United Kingdom, which abolished anonymous donations, it’s still a significant step for many parents of donor-conceived children who yearn to answer that question most kids ask at one time or another: where did I come from?
“It’s a good step in the right direction,” says Jennifer McCarty, a Seattle mom of a donor-conceived 3-year-old daughter and an adopted 4-year-old son. “As a parent, I want to be able to provide a way for them to find out who they are and dig into their origins.”
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But while open adoptions — where birth mothers and adoptive parents communicate freely — hardly raise an eyebrow these days, in many circles, donor disclosure is struggling to catch up. Sure, The Kids Are All Right, last year’s edgy tale of a lesbian couple with two kids from the same sperm donor, racked up a Golden Globe win and an Academy Award nomination, but that’s Hollywood. Meanwhile, just over the border from Washington, a landmark case in British Columbia that bans anonymous gamete donation is on appeal by the government.
“The idea of donor anonymity as the rule was an entirely uncontroversial idea,” says Julie Shapiro, a law professor at Seattle University who blogs regularly about how the law defines the concept of family. “Blood and organ donors are anonymous, and we don’t think that’s weird. But there is an emerging sense that it’s a problem for children and it’s a problem for donors. They have regrets.”
A former egg donor, San Diego attorney Theresa Erickson disagrees; she thinks pushing full disclosure is a mistake. “Opening up completely is just not going to work,” says Erickson, who draws up contracts between would-be parents and donors. “There are a lot of men and women that just don’t want their information out there.”
Indeed, Washington’s new requirements may not change much at European Sperm Bank USA in Seattle and NW Cryobank in Spokane, the two places in the state that process gamete donations. Three-quarters of donors at NW Cryobank ask to remain anonymous, and under the law, they’ll still be able to. The Seattle bank, meanwhile, accepts only “open-ID” donors; in the past few years, only three of their more than 4,000 applicants — mostly graduate students at the University of Washington — have inquired about remaining anonymous. “We think the world is moving toward a place where we have no barriers to personal information,” says CEO Greg Moga. “Look at the Internet, look at Facebook. Everything is discoverable.”
Not everyone sees it that way, though. The American Society for Reproductive Medicine (ASRM), which represents fertility clinics across the country, thinks Washington is intruding on donors’ privacy. “Most people, both donors and recipients, still prefer anonymous donation,” says ASRM spokesman Sean Tipton. “We think families and donors ought to be allowed to make decisions in terms of anonymous vs. non-anonymous donation. We don’t think we know the answer to that question, and we certainly don’t think states know the answer.”
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Less controversial than disclosure but equally significant is the issue of donor medical records, which the new law stipulates must be kept permanently on file. The U.S. Food and Drug Administration requires sperm banks maintain medical records for just 10 years. And while ASRM guidelines advise fertility clinics to hold onto records indefinitely, there is no routine oversight.
“Do you know how often I hear from donor offspring who say they called their clinics only to find out that the records have been destroyed?” says Wendy Kramer, who launched The Donor Sibling Registry (DSR) in 2000 when her donor-conceived son, who was 10, started getting curious about his roots. Kramer got no help from her sperm bank or fertility clinic, so she took to the Web, creating a Yahoo Group where nearly 8,500 donor kids have found their half-siblings or donors. It took seven years, but in 2007, Kramer’s son became the 2,910th person to locate a half-sibling. He’s since connected with five others, plus his biological father and grandparents.
Access to medical histories can be critical, as Rebecca Blackwell’s case illustrates. Three years ago, Blackwell, a genealogist from Frederick, Md., sleuthed around online and was able to suss out the identity of the donor whose sperm had helped create her son, Tyler, now 18. The donor, “John,” never responded to a certified letter she sent with pictures of Tyler, but last year, John’s sister wound up contacting Blackwell. In 2007, she said, John had suffered a ruptured aortic aneurysm, and his mother and two brothers were at risk too. All the children his sperm had helped conceive had a 50/50 chance of inheriting the condition, which killed Lucille Ball, and more recently, actor John Ritter.
The defect is preventable with corrective surgery, which Tyler had last summer. But he never would have known about the condition had his biological aunt not reached out. “These children need to know their medical history,” says Blackwell, who posted news of Tyler’s condition on the DSR so his five half-siblings on the site would be aware. “In this case, it was life-saving for my son.”
But Blackwell’s experience also highlights the shortcomings of medical histories. A donor’s medical history is just a snapshot in time, taken at the time of donation; although some banks — including Seattle’s — conduct periodic updates, not all do. At NW Cryobank, donors are asked to keep the bank informed of any changes, but few do. “Most of these egg and sperm donors are young college kids who are on the move,” says Tammy Zimmer, the bank’s managing director. “They’re difficult to keep up with.”
Donor offspring know just how true that is.