As Egg Donations Mount, So Do Health Concerns

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The serious short-term risks of egg donation are much better understood: ovarian hyperstimulation syndrome, ovarian torsion or ruptured ovarian cysts. In late 2008, a study of 587 egg donors who underwent a total of 973 cycles of ovarian stimulation at a single clinic in New York City found serious complications in 0.7% of the cycles and minor complications severe enough to prompt donors to seek medical attention in 8.5% of the cycles.

The trouble is that many donors may not be aware of the risks. Judy Norsigian, executive director of the Boston-based nonprofit Our Bodies Ourselves, says that when her organization makes presentations on college campuses, she consistently finds that women who are considering egg donation — or worse, those who have already donated — are uninformed about the potential health risks associated with the procedure. (Read "How Much Is a Year of Life Worth?")

A recent study of past donors seems to support Norsigian's impressions. In an article published in Fertility and Sterility in November 2008, researchers found, for example, that 34% of former egg donors didn't recall being aware at the time of donation of the risk of ovarian hyperstimulation syndrome, the most common side effect. The majority of donors experience at least the mild or moderate form of this syndrome, which involves discomfort, bloating or nausea and usually resolves itself on its own. The severe version of this syndrome is rare — only 100 to 200 for every 100,000 women — but its consequences can include kidney failure and death. And then there are other side effects, such as bleeding, infection and death, which are associated with any surgery performed under general anesthesia. But fully 20% of the 80 donors interviewed said they didn't know there were any physical risks to egg donation at all.

"There is a clear problem about informed consent here," Norsigian says.

The ASRM's Tipton argues that it's difficult to determine whether doctors fail in their responsibility to communicate the risks or whether patients simply do not absorb all the necessary information before signing consent documents. "What are you supposed to do, give the patient a quiz or have them read it back to you before they sign it?" he says. "At some point you have to trust that a patient means it when they choose to participate and sign forms saying they had the risks explained to them."

One thing the fertility industry and some of its harshest critics appear to agree on, however: the need for an egg-donor registry. If there were a centralized repository for donor records, Ginsburg and Schneider believe, patient follow-up and long-term studies could be conducted. But the challenge is settling on the right kind of registry. After consulting with the ASRM, in January, advocates in the fertility industry founded a nonprofit voluntary registry of egg and sperm donors. It is still unclear who will pay for it, how it will work and what role the ASRM will play in maintaining it, but already industry critics say it's not quite what they had in mind. (Read "The Fertility Doctor Behind the 'Octomom.' ")

"The Octomom case proved that private regulation alone has never been sufficient," says Debora Spar, president of Barnard College and author of The Baby Business, a book about the fertility industry. Both Spar and Schneider say the CDC should maintain a mandatory national registry.

California Assemblyman Marty Block has also sought government intervention, and in January considered proposing legislation to establish a statewide egg-donor registry. But realizing that such a costly endeavor would have little chance for success given the state's budget woes, Block settled on a more recession-friendly action. In late February, he presented a bill that would require all advertisements promising thousands of dollars to egg donors to carry some fine print. It would inform women that there's not much information on the long-term risks of donating.

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