In 2007, I became an egg donor for the first time. In 2009, I was diagnosed with Stage IV endometriosis and told that if I ever wanted to get pregnant, I would need to pursue IVF right away. In 2010, I did just that—two IVF cycles, both of which failed.
This background has given me a unique perspective on the fertility industry. I’ve seen it from both sides: as a donor and a patient. And through that experience, I came to realize that there is a lot about the practice of egg donation that probably needs to change.
I also realized that most egg donor recipients have no idea those issues exist: Not because they are heartless or don’t care, but because the standard sales line they are getting from clinics is the same most donors are fed: Egg donation is practically risk-free and a win-win for all parties involved.
The truth, unfortunately, is a little more complicated than that. And it’s the reason why I personally have always known I could never use an egg donor.
But it’s also why I feel really strongly about reaching out to potential egg donor recipients. Not because I want to talk them out of using a donor (I think egg donation, when done right, can be a really beautiful way to build a family), but because their voices are the ones most likely to be heard in a call for change.
Change that will hopefully one day include better regulations to protect donors and actual long-term research into the potential health risks donors face.
(Egg donation) felt very transactional and shrouded in feel-good marketing language, like I was on a conveyor belt where thousands had passed before me.
Raquel Cool is the founder of We Are Egg Donors (WAED)—the only group of its kind bringing donors together to discuss their experiences. I was able to interview her recently about some of what she’s learned in her years of working with donors, and some of what she wishes recipients knew about the process donors face:
Can you share your background as a donor? And a bit about how the concept of WAED came to you?
Before I donated eggs I had donated my hair and blood and had registered to become an organ donor. I found the experience of egg donation to be a completely different exchange, though. It felt very transactional and shrouded in feel-good marketing language, like I was on a conveyor belt where thousands had passed before me.
When I asked if I could connect with other donors to ask questions of them, my agency told me they wouldn't arrange a call unless they could be on the line. It wasn't until I connected with Claire and Sierra (the other two founding members of WAED) through online blog posts that I finally met other egg donors! We had so much to say about our donations, with the kind of kinship and intimacy and no-such-thing-as-a-TMIness that you'd expect from going out for drinks with close friends. We started having weekly video calls that were incredibly meaningful to us, and we wanted to expand that and have others join the conversation. Our goal was to create a safe space so that women could have authentic conversations about the commercial sides of egg donation, the risks and what matters to egg donors. We wanted to open that conversation so that potential donors could actually ask the questions none of us were able to ask before we donated. It was like turning on a light! We had no idea what we would find.
We’ve had donors who were intimidated and threatened by agencies when they tried to back out prior to donation, donors who felt as though their medical needs were the lowest priority ...
What are some of the positive things that have come into your life because of egg donation and this platform you've built?
WAED has been a powerful vehicle that supports informed choice. We don't accept donations from the fertility industry (though those donations have been offered), because we feel strongly about keeping the stories we share uncompromised. Our blog features so many different perspectives and considerations that have helped so many people around the world decide whether or not they want to pursue egg donation. Positive, negative and neutral—we allow all of it. Mostly because we want potential donors to have a full picture of what awaits them, and we want past donors to know they aren’t alone in their experiences.
There's a one-sidedness that comes with egg donation, where donors are expected to defer to medical authorities and keep the process seamless and efficient. The professionalization of the process can create a dynamic in which a donor is afraid to speak up with questions, with concerns.
We’ve had donors who were intimidated and threatened by agencies when they tried to back out prior to donation, donors who felt as though their medical needs were the lowest priority, and donors who have revealed how little agencies actually do to vet the donors they present to recipients.
Donors shouldn't have to sneak photos of their medical records because the doctor refuses to tell them what's going on. I think the best moments on the forum are when a donor says, "Hey, you ladies have given me the courage to speak up. I would've felt pressured to continue. I would've been afraid to say no. I couldn't have done that without your support and understanding."
It used to be that donor voices were absent from the conversation. Egg donors were kind of spoken for as a monolithic character—either voiceless, uninformed victims or doe-eyed altruists who were oh-so-happy to 'give the greatest gift' to help someone in need. Donors are people with complex feelings about their donations, and I hope that our humanness will be increasingly recognized by recipients and the mainstream population.
The American egg donor industry is very different from other countries because it is so profit-driven here.
What would you like to see change within the egg donation industry?
I think that a lot has changed, but not enough. There's a long way to go as far as shifting how egg donors are treated. Consistent standards of informed consent are sorely needed. The fertility industry needs to recognize that donors care about more research.
We have nearly 1,000 members in 12-plus countries. There have been numerous short- and long-term risks reported within our group, to the point where we had to create a sub-group to address women who have had issues. Yet still, no one in the fertility industry seems interested in following up on those issues or conducting the research that might actually produce answers.
The American egg donor industry is very different from other countries because it is so profit-driven here. The quest for higher numbers of eggs means a scary number of donors are sent to the hospital for severe OHSS (ovarian hyperstimulation syndrome)—where they have to have their stomach tapped and drained. This is a risk that we're often told only happens 1 percent of the time, but within our population of donors? It’s much, much more common.
There's no tracking though. This data isn't being collected. Not only is the ASRM not interested in collecting it, the President Elect has testified at the State Capitol in Sacramento that the data we have (which, again, is none) is sufficient. I was in attendance when he made that argument. They really don't care to further this research.
Which means donors and recipients alike aren’t getting the information they deserve.
This won’t change until all parties involved start asking more questions, demanding more research and placing a priority on donor health.