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egg donors A stylised view of an ovum.
Tuesday, Mar. 31, 2009

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At the time, donating her eggs to an infertile couple seemed like the perfect solution for Marilyn Drake's money troubles. A single donation helped her finance her divorce. Then she did it four more times over the course of two years, as she struggled to raise two children on her own.

In 2004, having remarried, Drake began trying for baby No. 3. She tried for three years, with no luck. At 30, she was diagnosed with premature menopause and, in an odd twist of fate, had to undergo fertility treatment to have her third child. It struck her as particularly curious, since her identical twin sister never had any fertility problems. (See the top 10 medical breakthroughs of 2008.)

"At the time, I was told it wouldn't affect my health or fertility," says Drake, 32, of Lebanon, Ore., referring to her egg donation.

Doctors say there is no biological reason that donating eggs would cause infertility, but they also cannot say for sure that it doesn't. The long-term health effects of egg donation have never actually been studied, in large part because the high cost of studies doesn't "seem justified in terms of what the possible risks [of the procedure] might be," according to Sean Tipton, spokesman for the American Society for Reproductive Medicine (ASRM). He points out that egg donors undergo the same drug treatment as IVF patients — hormone injections and other drugs that stimulate follicles, promote egg maturation and prevent the release of eggs before they can be retrieved — and that studies of the latter population show it is safe.

But some women's health advocates say that evidence isn't strong enough, calling for further study and a national, trackable registry of egg donors. While the Centers for Disease Control and Prevention (CDC) logs the number of donated eggs transferred to infertile women each year — there were some 15,500 in 2006, the most recent year for which data are available — no one knows how many individual donors those eggs came from, who they were or whether they were exceeding industry guidelines of six donations in a lifetime. (The guidelines are intended to limit the number of offspring from a particular donor and to prevent overexposure to fertility drugs, but they are not based on scientific data.)

"Right now egg donors are treated like vendors, not as patients. Patients need to be followed up," says internist Jennifer Schneider, who has been advocating for the government to track egg donors since 2007, a few years after her daughter, a three-time egg donor, died of colon cancer at age 31. "After the first few days of being discharged from the IVF clinic and seeing that there were no immediate consequences, they are never contacted again."

The issue has resurfaced recently, with fertility clinics and egg-donation agencies across the country reporting a precipitous increase in applicants seeking to donate eggs — as high as 55% over the past four months compared with the same period last year. With college students struggling to pay tuition and young homeowners facing foreclosures, much has been made of the potential economic benefits of donation, a term that belies its lucrativeness: egg donors can earn about $5,000 per donation, with thousands more in premiums for eggs from women with exceptional looks, high SAT scores or an Ivy League diploma, and an in-demand ethnic background, such as Jewish or Asian. Proven donors whose eggs have already succeeded in making a baby are also often paid premiums for subsequent donations. (Read "How Not to Get Misled by Health Statistics.")

The surge in interest hasn't yet translated into an uptick in donations, since the majority of applicants are weeded out in a rigorous screening process. But it still prompts the question: What are the long-term risks of donating?

So far, there have been no long-term medical studies of donors. But fertility doctors agree that a lot can be gleaned from the smattering of studies of long-term risks for infertility patients, who receive the same protocol for ovarian stimulation and retrieval as donors. The primary health concern is cancer, and studies assessing cancer rates among infertility patients have drawn conflicting results. Many such studies are hobbled by small sample groups, or are too short term. The most extensive study to date, published in February in the American Journal of Epidemiology, used historical data from women who gave birth in Jerusalem in the early 1970s. It found a significant 30-year increase in various cancers among women who underwent fertility treatments, with the highest risk being for uterine cancer.

But studies like this establish only an association, not a cause; fertility doctors note that infertility itself is associated with elevated risks of uterine cancer. "It's hard to say if the cancer was caused by the disease, the treatment of the disease or some combination of the two," says Elizabeth Ginsburg, a fertility doctor and president of the Society for Assisted Reproductive Technology.

Reproductive-health advocates respond by calling for a study of egg donors, who could also serve as a natural control group for a study of cancer in women who are treated for infertility. Another long-standing question among doctors and donors is whether egg donation affects future fertility, says Schneider, who has conducted a survey of 155 egg donors and heard several reports of fertility problems among women post-donation. Schneider concedes that her poll was too informal and small to lead to any conclusions and suggests that a larger, national study be undertaken.

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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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  • Catherine Elton
Photo: Illustration by MedicalIRF / Corbis