Egg Donors Create Support Group for Women and Push for More Safety Data

By Raquel Cool, co-founder of We Are Egg Donors — July 30, 2013

We Are Egg Donors website

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.

4 responses to “Egg Donors Create Support Group for Women and Push for More Safety Data”

  1. Hi Raquel, I think what has done for you with the surrogacy agency was not right and I appreciate your brave decision to cancel the process with them and co founded ” We are Egg Donors “. I liked your mission of giving egg donors with proper legal and advocacy support.

  2. You are awesome. I have some questions about the conflict of interest within the medical profession itself. Really if they are performing services for you that require a medical license, then that makes YOU their patient right? So it’s YOU that seeks the fertility treatment. Officially for them to treat you, you have to approach them and your saying that you are desirous of fertility treatment, you want to have offspring and would like your eggs removed and fertilized with sperm in a lab so that you can produce multiple embryos good for numerous pregnancies. Then the doctor agrees to perform the fertilization services that you desire. I guess simultaneously you the patient are informing them that you have no money to pay for this embryo making treatment you desire nor do you have anyone in mind to be mated with and they then say that they have other patients who are willing to pay for your treatment allowing you to become a biological mother as you desire but only if you’d be agreeable to letting another woman or women gestate your pregnancies for your and also only if you’ll agree not to identify yourself as the mother of any of your offspring born as a result of the arrangement. They put your profile in a book and then if your chosen you get to start that process of making the biological children you want. I’ve read egg donor contracts and the part about the egg takes up a tiny fraction of the contract compared to the part about giving up parental rights and obligations when the kids are actually born. It’s all about the baby not the egg.

    So is your medication prescribed to you the patient or to whomever is going to be gestating your embryos? Like what does the bottle actually say whose name is on it? If you have your own medical insurance and your being compensated for doing something that costs the insurance company money don’t they come after you for your compensation? My husband got a settlement from being hit by a car and Kaiser wanted a piece of it got a piece of it even though we had full coverage. Also they are giving treatment to someone who obviously does not need it which is the same as elective plastic surgery I guess, but are they actually paying you or does the check get cut by the man your mated with or by the woman gestating your pregnancy? Where does the check come from? They say your being reimbursed for your time and suffering but its taxed as income not reimbursement so isn’t it kind of a violation of a physician’s license to dabble in what is essentially a paid dating service? Where men and women meet and decide to reproduce together. Doctors don’t care if you raise the kid yourself or not the process is the same in the lab. What if something goes horribly wrong and you need emergency care who pays for that?

    Also since you are the one exercising your reproductive freedom you could by rights withdraw consent to allow anyone else to carry your pregnancies at any time without returning a dime of the money because there is no such thing as a contract to reproduce with someone. Certainly no such thing as a contract for possession and title over your offspring. The whole thing holds together so long as you don’t change your mind which you really could at any time. Like right now there may be embryos on ice out there. You may be like you know what? I’m not going to have anymore offspring that I don’t raise myself and they cannot force me to reproduce myself if I don’t want to. You could call your lawyer and notify the clinic that you want every embryo of yours on ice destroyed unless you get to gestate and raise the kid yourself. Your not a slave, they did not buy your freedom to change your mind. They don’t own the body parts heck they even reimbursed you for your time not your eggs. The eggs are still yours. Go get them back. That would make a big bold statement to the industry if every sperm and egg donor asked for their stuff back. Have a run on the banks and cause the market to crash.

    I reunite families separated by donation free and am working with several well known activists who have donated their eggs like Alana for instance. I wish you good luck with your campaign. Stay healthy

  3. But from the doctor’s point of view, the ‘donor’ title is really irrelevant right? You are an insured female seeking fertility treatment and you want your eggs harvested and fertilized in a lab for the creation of your embryos. The consent forms for medical treatment don’t address anything other than your consent to medical treatment, not what you plan to do once your offspring are born and not even what you plan to do with your embryos after they are created. I would hope that your future plans for your embryos would not have any bearing on the doctor treating you; you could plan to gestate your embryos you could plan to have someone else do it for you or you might just donate them all to be studied or could have them all destroyed. Do you think the fact that someone else is paying your bill for fertility treatment is a conflict of interest where they treat the payer like a patient instead of you? It should not matter who pays them they should treat each patient the same.

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