INTERVIEW by Raquel Cool, co-founder of We Are Egg Donors
I first met Diane -- a fascinating medical anthropologist who has tackled everything from the sperm-banking industry, to kidney sales in Islamic Republic of Iran, to the politics of family planning among Afghan refugees -- in downtown Berkeley over some iced tea and sandwiches. It’s hard to believe that was almost three years ago.
We Are Egg Donors had freshly launched, and Diane and I talked about how egg donation has existed for roughly 30 years and there hasn’t been any research on the long-term health effects. Such a study is profoundly important.
Since then, Diane is now spearheading a comprehensive study on international egg donation at University of California San Francisco. Following a pilot grant from the University of California, San Francisco, we are now inviting egg donors to participate in this important research.
Enter Dr. Tober.
WE ARE EGG DONORS: We love that you’re passionate about your research. Tell us why this study is important to egg donors.
DR. TOBER: I think it’s so important for women considering egg donation to have more information about other women’s experiences. it brings up so many interesting questions surrounding the body, meanings of motherhood, perceptions of genetics, money and altruism, bioethics, and so on. This work follows up on similar themes as my earlier work, but also adds new dimensions.
In my early conversations with you, I was stunned to find out how little information is available to women on egg donors’ experiences. How little research there is available on the potential short- and long-term side effects of the drugs and surgeries on women’s bodies. Providing more information on women’s experiences as egg donors is not only crucial to informed consent, but also to larger social issues.
WE ARE EGG DONORS: How did your research lead to your forthcoming documentary, The Perfect Donor?
DR. TOBER: When I started doing the research, I was so moved by egg donors’ stories, that I thought it would be really important to capture these on film. I figured with research, even if you publish articles in academic journals, most women considering egg donation, looking for more information, might not be able to find these academic articles. So, I decided to do something that would reach a much wider audience, and be much more accessible to 18 to 30 year-old women. While some women have had good experiences; others haven’t.
I think that by providing the range of issues for donors, women will have more information before deciding to become egg donors. I also think the film will be important for informing intended parents and infertility professionals about what egg donors go through, in order to improve the practice for everyone.
Egg donors make huge sacrifices, both for economic incentives but also with a desire to help other people. They deserve to have access to all information.
WE ARE EGG DONORS: True. It’s hard to find evidence-based, non-directive information about egg donation. So much of it is presented by recruiters. In your view, what are key questions egg donors can ask?
DR. TOBER: I think, first and foremost, egg donors should know what their contracts state and realize they can negotiate terms they aren’t comfortable with. It’s important to know the feel of the clinic you’re going through, in order to know how well you’re going to be taken care of.
WE ARE EGG DONORS: Right. Have you come across any real-life examples where self-advocating is necessary?
DR. TOBER: The agencies and clinics are looking for donors—they need women to provide this service for their patients—so if they’re not answering your questions, addressing your concerns, or refuse to consider terms you want in your contract, you can decide to go somewhere else, to another agency or clinic that you do feel comfortable with. It might not feel like it at the time, because many women are so concerned about being “accepted,” but you’re the one in charge. They’re looking for you.
WE ARE EGG DONORS: How can the fertility industry be improved in your view?
DR. TOBER: This is one of the things I’m interested in in my research. I don’t think egg donation should be banned per se, but there is a lot of room for improvement that can help make the process better for the women who decide to do it, which ultimately is better for the industry.
There should be greater transparency -- meaning more information on clinics actual statistics related to egg donation cycles for donors, not just “success rates.” For example, I think each clinic should be required to collect and report all donor complications, such as: OHSS rates, surgical complications, average numbers of eggs retrieved per cycle, and so on. And donors need to make sure to report whatever complications they have to the clinics as well.
Greater accountability is needed. If a donor is harmed in the process, surgically, through OHSS, or other means, clauses stating that she has no legal recourse for a malpractice suit need to be stricken from contract. How is it that egg donation and surrogacy are some of the only medical procedures where if a physician causes harm he/she can’t be held responsible for damages?
WE ARE EGG DONORS: This is a great point. While most medical consent forms include wording about the potential risks, should complications occur, we’ve seen a concerning trend of egg donors being told that there’s nothing the IVF clinic can do for them. What else?
DR. TOBER: There is a need for an egg donor registry and long-term tracking. In over 30 years since women have been undergoing ovulation induction and oocyte retrieval, there is still little to no research exploring the short- and long-term emotional and medical impact of egg donation on women’s lives. There is now a registry and tracking of people who donate kidneys, why not for women who provide eggs?
Lower hormone dosages is important — medical protocols and hormone dosages vary widely between physicians and clinics, and also vary from donor to donor depending on their resting antral follicle counts. One of the physicians I interviewed for my film, The Perfect Donor, explained how when a physician retrieves a high quantity of eggs, it is a direct result of what that doctor decides to do medically. In her opinion, aiming for more than 20 eggs in a single cycle is bad practice, and is “iatrogenic”—a medical complication directly caused by the physician. But when you have some practices that either have shared programs, or freeze and bank and resell leftover eggs, there is obviously a vested interest in increasing dosages to increase quantity of oocytes produced.
Fewer cycles is also something to consider. I think it would be prudent to reduce the numbers of cycles per donor. Right now, there is no regulation on number of cycles. The ASRM recommends that a woman undergo no more than 6, but this is not enforceable.
Finally, the fertility industry can move towards better donor care. The difference between having a positive experience and a negative one for donors is in the hands of the clinic, and how well they listen to their donors, how much they care about them, and how well they treat them.
WE ARE EGG DONORS: How can we support your work?
DR. TOBER: We were recently awarded a pilot grant from UC San Francisco to start the preliminary research. I’m also in the process of applying for other funding in order to expand the scope of this project.
It’s really important to interview egg donors from a wide array of backgrounds and experiences, in order to get a clear picture of the impact of egg donation on women’s lives. I want to be sure to include both positive experiences and the not-so-positive experiences, in order to have reliable results and present an accurate picture of both the impact of egg donation on women’s lives, and also the industry. My goal is to start building a project to collect long-term data on women’s psychological and physical experiences surrounding egg donation over time.