Egg Donors Create Support Group for Women and Push for More Safety Data
By Guest Contributor — July 30, 2013
by Raquel Cool
co-founder of We Are Egg Donors
I recently decided to retire as an egg donor.
This choice is clearly right for me, and although I speak for myself and note that the views expressed below are my own, I know that there are others who share my concerns.
Months ago, I viewed a slideshow by Dr. Jennifer Schneider in which she said that donors are treated more like vendors than patients [Ed note: Schneider’s daughter, a three-time egg donor, died of colon cancer at age 31]. That statement has stayed with me. In my experience, the egg extraction process is streamlined, impersonal and automated.
Each busy specialist has a designated purpose and only stays in the room long enough to get what they need, whether it’s blood drawn, a cervical swab, a snapshot of my ovaries, etc. It can be a very draining process, and egg donors have no one to reach out to in these instances because we’re supposed to be “professional.” Even the psychologist is hired to assess — not counsel — the donor.
With the financial component, the donor’s role is more like a professional vendor. This furthers the likelihood that we won’t want to speak up about medical, psychological or health concerns, because the expectation is that we should defer to medical authorities and keep the process efficient.
I’m also troubled by the fact that most donors do not recognize a serious conflict of interest — relying on the advice of fertility doctors whose primary patients are the individuals seeking assisted reproductive technology (ART) services.
OBOS is publishing a series of posts on egg donors and the egg donation process. Previously, Ryann Summers weighs the pros and risks of donating her eggs to a friend.
Egg donors, when viewed as “instruments” for achieving other people’s fertility goals, may have their own important needs neglected, and the financial incentives now in place for medical professionals don’t require paying close attention to the health and well-being of egg donors. Everything is structured to first benefit the agency/fertility center, and then the patients seeking to have a baby. The considerations of the egg donor are last.
For example, I recently worked with an agency/broker that did not inform me that I had the right to choose my own lawyer — they simply told me that my lawyer (who is also the lawyer for the recipient couple using my eggs) would be contacting me.
That lawyer emailed me a document to sign that would waive the “inherent conflicts of interest” of having one legal group represent both parties. I ended up choosing my own lawyer, although the broker resisted (“Well, you can do that, but none of our egg donors ever have.”).
Ultimately, I ended up canceling the process. I realized that I no longer have it in me to participate in an industry that has resisted researching donor health for decades.
I recently spoke with a two-time egg donor who was diagnosed with an advanced case of endometriosis only six months after her last donation. When she reported her diagnosis to the egg donor agency, they invited her to use their services to treat her infertility. They said that many former egg donors have turned to them, years later, being diagnosed with infertility themselves. This saddens me deeply.
I would be open to donating if the health risks were better understood, and if the industry’s practices were designed to value the health and well-being of the egg donor.
The group I recently co-founded, We Are Egg Donors (WAED), has a mission to provide legal, emotional and advocacy support for women considering or providing eggs for fertility purposes. We offer a neutral space where women can engage in transparent conversations about their experiences — without the presence of a commercial or political agenda “guiding” their personal narratives.
Every donor’s perspective is different; this is mine. WAED doesn’t want to create a one-size-fits-all political voice for all egg donors, but we do share a passion for making sure that women who choose to do it are informed, supported, safe, and connected to agencies who will advocate for them.
We are compiling a digital library of information so women have access to more evidence-based information on the process. We are also promoting awareness of and participation in the only national voluntary registry that is tracking the long-term health of those involved in ART procedures: the Infertility Family Research Registry, based at Dartmouth Hitchcock Medical Center in Hanover, N.H.
We welcome the inclusion of additional resources for our website, and I hope to hear from those who share our mission. Please contact me (raquel AT weareeggdonors.com). To learn more about WAED, visit WeAreEggDonors.com.
Young women are increasingly being recruited to donate eggs for infertility and research purposes, though numerous health questions remain unanswered. Our Bodies Ourselves is calling for the creation of a mandatory health registry to facilitate long-term tracking and studies to better understand the risks of egg extraction.
Please support the Petition for Human Egg Extraction Health Registry & for Warnings on Ads and Notices Seeking Egg Donors, started by OBOS, the Alliance for Humane Biotechnology, Pro Choice Alliance for Responsible Research, and the Center for Genetics and Society, and endorsed by other organizations.