Egg donation offers thousands of U.S. couples the opportunity to start a family, enabling them to carry a child when their own eggs cannot be used. However, while the process brings joy to so many new parents, the egg donation industry has a dark side.
In her new book, Eggonomics, medical anthropologist Diane Tober lifts the lid on the rarely told reality of egg donation.
“When I first started conducting research with egg donors, about 10 years ago, I was shocked by how little information most donors had about potential risks and benefits,” Tober told Newsweek. “I was also stunned to hear from so many of them who had had some pretty awful unanticipated side effects.”
Many of the donors she spoke to had been told by their agencies and clinics that the risks were “less than 1 percent.” However, when Tober scoured through the scientific literature, this statistic was nowhere to be seen.
“In fact, the few articles that had been published found that immediate complications, for example for a common side effect known as ovarian hyperstimulation syndrome (OHSS), was much higher—somewhere between 5 to 13 percent, depending upon the article,” Tober said. “I also discovered that there had been no longitudinal studies specifically looking at the impact of egg donation on donor health and well-being over time.”
During her research, Tober spoke with more than 300 donors, and surveyed more than 1000. Of these, the majority said they felt they had been under-informed about the potential risks and long-term impacts of this procedure.
It was this lack of information that inspired Tober to delve deeper. But as she did so, more disturbing truths came to light. Many of these revolved around the compensation provided to donors.
“In the U.S. we have a very tiered market in human eggs. The U.S. egg donation industry is driven by consumer demand and recruiting a supply of donors to meet that demand,” Tober said. “Intended parents typically search through online donor profiles for traits they want to hopefully see in their future children. Some of these traits are more social, like seeming like a kind person, liking the same things, reading the same books or sharing hobbies, and just basically finding someone the intended parent can relate to or feel a connection with.”
However, in their search for the perfect donor, prospective parents may find themselves focusing on physical traits too.
“A lot of the time, what drives the demand of some donors over others include physical traits, like hair and eye color, skin tone, ancestry that go well beyond just trying to find someone who resembles the intended parent,” Tober said. “The selection and marketing of donors in the U.S., then, carries some disturbing eugenic overtones.”
This can also extend to the donor’s background.
“Many intended parents consider donor education important and look for a donor who attended an Ivy League university, or who demonstrated high performance on standardized tests,” Tober said. “But these different traits come with a price tag attached.”
She went on to give an example: “An Ivy League Chinese American donor may be paid as high as $250,000 for a single round of egg donation, while a donor with less education or of a different ancestral background might only receive $8,000.”
Race is a factor in this two tiered system—in a comparison of more than 900 egg donors, Tober found that the top white donors in the U.S. were being compensated roughly $100,000, while the top rate for Black donors was only $12,000.
iLexx/Getty
In the book, one donor said: “From me they wanted really, really specific things, and I was feeling like, ‘Oh my god. This is eugenics.'”
Despite these disparities, the price tags attached to egg donation, combined with student debt and economic instability, have motivated many to sign up and undergo multiple rounds of egg donation, without necessarily understanding the implications.
“Some clinics and agencies encourage donors to continue to donate well beyond the ASRM recommend cycle limit of six in a lifetime,” Tober said. “One donor in my study donated 19 times! If we had a system to track donor cycles these kinds of things wouldn’t happen.
“I’ve also seen donors hormonally stimulated to produce massive quantities of eggs in a single cycle. The target range is supposed to be about 15 to 20, rather than the normal one per menstrual/ovulation cycle, but some physicians aim to get as many eggs as they can out of a single donor cycle. Some donors in my study have produced as high as 80 eggs in a single cycle! This kind of practice increases risks for the donor […but] the more eggs a donor produces the higher the profit potential to the clinic.”
During her interviews, Tober spoke to many women who had encountered serious complications following the donation process.
“Four of the women in the survey portion of the study had what’s called Critical Ovarian Hyperstimulation Syndrome and suffered life-threatening complications, including one whose kidneys began to shut down, another who suffered cardiac arrest and had to be resuscitated, another who developed a blood clot on her kidney and had to be on blood thinners for over a year after being released from the hospital, and another who suffered a stroke,” Tober said.
“Then there are also women in the study who suffered from rare reproductive cancers… Do we know for sure that these unfortunate situations came about as a direct result of their egg donations? No. But these kinds of cases certainly point to the need for more research on egg donor health post-donation, and longitudinal studies that follow donors throughout their donation cycles and beyond.”
Ultimately, egg donation can be a rewarding, joyous experience, offering hope to roughly 16,000 couples every year in the U.S. alone. But the industry needs to change to ensure protection and equality for all egg donors.
“I think it’s time to think about what good, evidence-based policy might look like,” Tober said. “Obviously, egg donation helps a lot of people create the families they desperately desire, and I absolutely support the rights of all individuals and couples to build their families using assisted reproduction when needed. At the same time, the experiences and rights of egg donors have been shoved under the rug.”
She continued: “I think developing a registry to track donor cycles, to stop donors from going beyond recommended cycle limits, and enabling follow-up research on donor health is essential. I also think we need legislation that will hold bad actors accountable and provide donors with more avenues for recourse if they are harmed, or when medical malpractice occurs.”
In Eggonomics, Tober sets out the following recommendations to ensure safety and fairness for all parties involved in this life-giving procedure:
- Recognize donors’ rights to truthful, thorough and standardized informed consent, including how pre-existing conditions like PCOS and endometriosis may be affected by the hormonal injection required.
- Reduce the potential for excessive donation by reigning in financial incentives in donor recruitment.
- Implement independent legal counsel for donors with enforceable terms when donor contracts are violated or when they experience medical harm.
- Recognize the rights of donors as primary patients.
- Recognize “no means no” when a donor expresses that she is not interested in doing another cycle.
- Implement practices to recognize all donors and intended parents have a right to be treated with respect regardless of race, gender identity, sexual orientation, and status.
- Establish a three-pronged donor registry to track donor cycles, enforce live birth limits, and enable immediate and long-term follow-up on donor health.
Is there a health problem that’s worrying you? Let us know via health@newsweek.com. We can ask experts for advice, and your story could be featured in Newsweek.