Exploitation and discrimination in egg donation exposed – DNyuz

Egg donation offers thousands of American couples the chance to start a family, allowing them to carry a child if their own eggs cannot be used. While the process brings joy to many new parents, the egg donation industry also has a dark side.

In her new book, EggonomieMedical anthropologist Diane Tober reveals the seldom-told reality of egg donation.

“When I first started doing research with egg donors about 10 years ago, I was shocked by how little information most donors had about potential risks and benefits,” Tober said. Newsweek“I was also shocked to hear from so many of them that they had had some pretty horrible, unexpected side effects.”

Many of the donors she spoke with had heard from their agencies and clinics that the risks were “less than 1 percent.” But when Tober reviewed the scientific literature, this statistic was nowhere to be found.

“In fact, the few papers that had been published found that immediate complications, for example for a common side effect known as ovarian hyperstimulation syndrome (OHSS), were much higher — anywhere from 5 to 13 percent, depending on the paper,” Tober said. “I also found that there were no longitudinal studies that specifically looked at the impact of egg donation on donor health and well-being over time.”

During her research, Tober spoke to over 300 donors and interviewed over 1,000 donors. The majority of donors said they felt inadequately informed about the potential risks and long-term consequences of this procedure.

It was this lack of information that inspired Tober to dig deeper. But as she did, more disturbing truths came to light. Many of them revolved around the compensation given to donors.

“In the U.S., we have a very stratified market for 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. “Expectant parents typically search donor profiles online for traits that they hope to see in their future children. Some of those traits are more social, like coming across as a nice person, liking the same things, reading the same books or hobbies, and just finding someone that the expectant parent can relate to or feel a connection with.”

However, in their search for the perfect donor, future parents often also pay attention to physical characteristics.

“Often, it’s physical characteristics that drive the demand for some donors over others, such as hair and eye color, skin color, race, that go far beyond simply finding someone who looks like the intended parent,” Tober said. “The selection and marketing of donors in the U.S. has some disturbing eugenic overtones.”

This may also relate to the donor’s background.

“Many intended parents feel that donor education is important and look for a donor who went to an Ivy League college or who has performed well on standardized tests,” Tober said. “But these different qualities come at a price.”

She gave an example: “A Chinese-American donor from the Ivy League might receive as much as $250,000 for a single round of egg donation, while a donor with less education or a different ancestral background might receive only $8,000.”

Race plays a role 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 paid about $100,000, while the top rate for black donors was just $12,000.

In the book, one donor said, “They really wanted very specific things from me, and I thought, ‘Oh my God. This is eugenics.’”

Despite these differences, the high cost of egg donation, combined with student debt and economic instability, has driven many people to sign up and undergo egg donation multiple times, without necessarily realizing the consequences.

“Some clinics and agencies encourage donors to continue donating well beyond the ASRM-recommended 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, this kind of thing wouldn’t happen.

“I have also seen donors hormonally stimulated to produce huge numbers of eggs in a single cycle. The target range should be around 15 to 20, rather than the normal amount per menstrual/ovulatory cycle, but some doctors aim to get as many eggs as possible from a single donor cycle. Some donors in my research have produced as many as 80 eggs in a single cycle! This type of practice increases the risks for the donor (…but) the more eggs a donor produces, the higher the profit potential for the clinic.”

During her interviews, Tober spoke with many women who had experienced serious complications following the donation process.

“Four of the women in the research portion of the study had what is called Critical Ovarian Hyperstimulation Syndrome and suffered life-threatening complications, including one whose kidneys began to fail, another who went into cardiac arrest and required resuscitation, another who developed a blood clot in her kidney and had to take blood thinners for more than a year after her discharge from the hospital, and a third 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 were a direct result of their egg donations? No. But these types of cases certainly point to the need for more research into the health of egg donors after donation, and longitudinal studies that follow donors throughout their donation cycle and beyond.”

Ultimately, egg donation can be a rewarding, joyful experience, providing hope to approximately 16,000 couples each year in the U.S. alone. But the industry must 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. “It’s clear that egg donation helps many people create the families they want, and I absolutely support the rights of all individuals and couples to have their families through assisted reproduction when appropriate. At the same time, the experiences and rights of egg donors have been swept under the rug.”

She continued: “I think developing a registry to track donor cycles, to prevent donors from exceeding recommended cycle limits and to allow for follow-up research into donor health is essential. I also think we need legislation that holds bad actors accountable and gives donors more avenues to redress if they suffer harm or if there is medical negligence.”

In EggonomieTo ensure safety and fairness for all parties involved in this life-saving procedure, Tober makes the following recommendations:

• Recognize the rights of donors to fair, thorough, and standardized informed consent, including how pre-existing conditions such as PCOS and endometriosis may be affected by the required hormonal injection.
• Reduce the risk of over-donation by limiting financial incentives when recruiting donors.
• Provide independent legal advice to donors with enforceable terms when donor contracts are breached or they suffer medical harm.
• Recognize the rights of donors as primary patients.
• Recognize that “no means no” when a donor indicates she is not interested in another cycle.
• Implement practices that recognize that all donors and intended parents have the right to be treated with respect, regardless of race, gender identity, sexual orientation, and status.
• Establish a three-tiered donor registry to track donor cycles, enforce live birth limits, and allow for immediate and long-term follow-up of donor health.

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