Fertility: Why We Need a Registry for the Long-Term Risks of Egg Donation

The risks women face from becoming egg donors are unknown. And we can't know the risks because long-term studies with a large population of women who have donated eggs have not been done. Now, one woman is calling for a national registry to track these unrecognized risks.

"Egg donors are provided with informed consent forms and information," physician and pain-management expert Jennifer Schneider tells Newsweek. "And what they are typically told is that there are no known long-term risks of egg donation."

Schneider's daughter died of cancer at the age of 31 after donating eggs three times. Schneider believes there is a dire need for a registry to which egg donors could report cancers and other long-term health effects.

Egg donation agencies solicit young, fertile women to "donate" eggs to intended parents who would otherwise have trouble conceiving a child. Egg donors cite emotional satisfaction with helping others start a family as among their reasons for donating—and "compensation" is typically thousands of dollars. Whether or not the practice carries long-term health risks has not been studied.

The lack of such data on egg donation stands in stark contrast to in vitro fertilization (IVF). National reporting on IVF, including data on both mothers and babies, is required by law, explains Alan Penzias, chair of the practice committee at the American Society of Reproductive Medicine and a professor or OBGYN at Harvard Medical School. Penzias agrees that a similar tracker is needed for egg donation in order to understand the risks. "One of the challenging problems with long-term studies in any field of medicine is the general absence of data registries for outcomes," Penzias tells Newsweek.

Data accrued from the IVF registry gives some clues about what egg donors face. The donors go through a treatment in which they take hormone injections for weeks to stimulate more of their eggs to mature than the typical one or two per month. Then, a physician retrieves the eggs—ideally 10 to 15—in a minimally invasive trans-vaginal procedure.

And investigations of IVF have revealed a risk. The "Million Women Study" in the U.K. concluded that "[c]urrent use of hormone-replacement therapy (HRT) increases the incidence of breast cancer." Researchers found that, for every 10 total years's worth of HRT use, five in 1,000 people get breast cancer that would not have occurred otherwise. The hormones that egg donors and IVF patients receive stimulate growth in sexual characteristics, so it is biologically plausible that they could affect cancer rates.

Still, the risk may be very minimal. The American Society for Reproductive Medicine guidelines regarding the use of fertility drugs concludes that the "use of fertility drugs does not appear to increase [cancer] risk" among IVF patients that have been studied. ASRM suggests that people who have reproductive problems are also at an increased risk of reproductive cancers, and that could explain why an IVF patient may be more likely to ultimately get cancer. It wouldn't be practical to do a controlled study on humans, so they can only do observational studies.

Several former donors have reported their anecdotes of unexpected cancer post-donation. Ten-time egg donor Maggie Eastman, who had no family history of the disease, developed stage 4 breast cancer at 32. Schneider's daughter developed colon cancer four years after her three donations. Two years after that, when Schneider's daughter was 31, the cancer proved fatal.

After being galvanized to study cancer in former donors, Schneider found, interviewed, and studied the health records of five former egg donors who later developed breast cancer. The journal Reproductive BioMedicine Online published her study in May. None of the former donors she interviewed had a genetic predisposition to the disease. Four of those women were in their 30s.

But did the donation cause, or even contribute to those cancers? Or would they have happened anyway?

"I'm not saying that my daughter died for sure because she was an egg donor," Schneider says. "I'm saying that I'll never know that because there have never been studies to show whether that is indeed a risk."

With this long-term registry data, it would be easier to tell if donors are more susceptible to these illnesses, or if they tend to get them at a similar rate to the population at large. "And that is what is needed in order to find out what these risks are so they can make an informed decision," Schneider says.