Interview: Inside Dr. Diane Tober’s Research on Egg Donors

We Are Egg Donors has been a long-time partner with Dr. Diane Tober, a medical anthropologist at UCSF who is researching egg donation in the United States and Spain. Our co-founder, Raquel Cool, recently sat down with her to interview her about her work.

RAQUEL: What first inspired your research?

DIANE: Well, you were really the one who initially raised my awareness about women’s experiences donating eggs. I had done research on people’s experiences with infertility, sperm donors, and single women and lesbian couples using sperm donors since the 1990s. At first, like many people, I figured egg donation was very similar to sperm donation. It never dawned on me at that time that some women could have adverse reactions or complications from donating eggs.

When we started interviewing the first 30 or so women from the budding We Are Egg Donors group, I was shocked by the range of experiences, and just how many women had experienced pretty serious Ovarian Hyperstimulation Syndrome, among other things. I knew then that I’d have to leave non-profit work and return to research full time through UC San Francisco.

RAQUEL: What have you discovered so far?

DIANE: I think there is a lot that egg donors don’t realize about how the egg donation industry operates—and also the fact that, until now, just how little research there has been on the impact of egg donation on women’s lives over time.

RAQUEL: How so?

DIANE: We hear over and over again that “the risks are less than 1%.” But I have not found any evidence to support that claim, and I’m not quite sure where that statistic came from; with the lack of research, it’s meaningless. So women who go into it really do not have a lot of information to go on when deciding to become egg donors.

Women in my research report a range of experiences related to their egg donations, both good and bad. On the risk side, I’m seeing much higher rates of OHSS than is reported in most of the existing literature, as well as other complications that may or may not be related to providing eggs, such as endometriosis, ovarian torsion, and some cancers. Now, I’ve spent the last five years interviewing egg donors. To date, I’ve interviewed over 100 egg donors for my research and documentary film, and collected over 200 surveys.

Really, a longitudinal study comparing donors and non-donors is needed to assess whether negative health experiences are higher in the donor group.

Another thing that surprises me is how different the United States is to most other countries, in regard to how egg donation and surrogacy are regulated, or actually under-regulated. In most other countries where egg donation occurs, compensation is much lower. It also appears that most donors in other countries are producing fewer eggs per cycle. This led me to wonder how the US compares with Spain, for example, where egg donation is more regulated, compensation is restricted, and doctors choose the donors instead of intended parents.

I’m also seeing a lot of older donors wanting to find the people born from their eggs—or donor-conceived people seeking out their donors—through direct-to-consumer DNA testing and ancestry websites. So that opens up an entire other issue regarding anonymity. Donor anonymity really is not possible anymore, so anyone who knows for certain they do not want to meet their donor-conceived children at some point in the future probably shouldn’t donate.

RAQUEL: Why is egg donation research important?

DIANE: Well, this goes back to what you pointed out to me back in 2013—the lack of research on egg donors. I think women and other people with ovaries have a right to make informed decisions about their bodies. But in the case of donating eggs, what exactly does that mean when there is a lack of research? You can’t really have informed consent without the data.

Research can also be used as a tool for donors to advocate for themselves. With more information, you can ask more informed questions of the doctor, agency recruiter, or other professionals.

I think research can not only be used to improve conditions for egg donors, but also help improve the entire industry. Clinics that push the envelope where safety is concerned need to be held accountable. And clinics and agencies that are more conservative be held up as models for best practices. I don’t think that we necessarily need to end egg donation. But I do think it can be done in a much better and safer way, and research can help determine what “best practices” might look like in the interest of egg donor health and well-being.

RAQUEL: Why compare US and Spain? Any interesting takeaways so far?

DIANE: Spain is the number one location in Europe for fertility treatment with donor eggs, but surrogacy is banned there. The US—especially California—is the primary location for fertility treatment with egg donation and surrogacy in the world. But the two countries have very different approaches to egg donation.

Spain requires donor anonymity, restricts compensation and physicians choose donors on behalf of their patients. In the US, donor anonymity is negotiable, compensation is unrestricted and intended parents choose their own donors. Spain, as you may know, also has both a private and extensive public health system—and no egg donation agencies—so these facts may also affect how egg donation operates.

As an anthropologist, I am really interested in the underlying cultural logics surrounding each system. I’m also interested to find out how these different regulations may influence the medical and business side of egg donation and, most importantly, how women’s decisions and experiences as egg donors may differ in each setting.

RAQUEL: What is important for egg donors or women considering egg donation to know?

DIANE: One of the biggest things I think donors need to be aware of is how the hormone protocols affect egg production. Some physicians do use higher dosages and recruit higher amounts of eggs in women who naturally produce a large number of maturing follicles. I think this is especially true in some egg sharing programs and at some egg banks, because the entire batch of eggs is being divided up for multiple recipients and sold in batches of 5 or 6, for about $18,000 a batch. In these cases, the higher the egg count, the higher potential profits.

I’ve also heard physicians say that they try to get a donor to produce at least 30 eggs for same sex male couples, so that each partner has enough good quality eggs to produce embryos with their sperm. I’m not sure if women are given this information when they’re deciding where to donate, but it’s something they should know. Every donor should keep track of how many follicles are maturing and know to ask to have their medications reduced if they’re producing high quantities of eggs, in order to reduce their risk for complications. If a woman is producing upwards of 35+ eggs on a single cycle—even with a Lupron trigger shot—that could be a cause for concern.

Beyond egg counts, I think it is really important for women considering egg donation to go over their contracts with a fine tooth comb, and know what you’re signing. Ask for your own attorney—rather than sharing an attorney with the recipients—so you have a better chance of having your interests protected. If you don’t feel comfortable with the idea of being forever anonymous, don’t agree to it. If you don’t want to be discovered at some point in the future by a child conceived from your eggs, you probably shouldn’t do it since anonymity is no longer an option. Know how many recipients will be receiving your eggs and what will happen with any leftover eggs or embryos. Know what happens if you change your mind, and at what stage in the process. Will you be held responsible for costs of the medications or a cancelled cycle? If so, dispute this. I've also spoken with donors who were asked to sign up for more than one cycle at a time. Since you don’t know after each cycle whether or not you will change your mind, signing up for one cycle at a time gives you room to decide.

If having a child in the future is important to you, another thing to consider asking is, whether the clinic or recipient will pay for you to freeze some of your own eggs? I know some clinics offer “freeze and share” programs, so this might be worth looking into if you don’t mind having lower or no compensation.

RAQUEL: What are your thoughts on egg donation advocacy? How can egg donors get the best experiences in this unregulated area?

DIANE: I think self-advocacy is so important, and that’s one reason why WAED is such a crucial resource! And personally, as a researcher, I’m really grateful to be collaborating with WAED because not only does WAED help me successfully recruit research participants, but it also helps me share the information I’ve learned from my work with the people who can benefit from it—current, former and prospective donors.

All patients need to be informed and ask their physicians a lot of questions, and insist on answers. But most people put their trust in doctors and don’t question them, don’t ask about medication side effects, and can be uninformed. For egg donors, many of whom are young and putting their bodies on the line for someone else’s child, this is especially true. I’m hoping my research can help donors and women considering egg donation know what questions to ask.

I also, ultimately, would like to see an “Egg Donor Bill of Rights” to be treated as equal patients to those seeking fertility treatment, and quite possibly some regulations to improve the practice for everyone. While many donors have been treated well, others have been treated poorly, and that just shouldn’t happen.

RAQUEL: Thank you for your time! We’re proud to support your research. Last thing: is there anything else you'd like to add?

DIANE: I was just recently awarded a National Science Foundation research grant to compare egg donors in the United States and Spain, so that’s really exciting. It will allow this project to really expand and develop to include cross-country comparisons on egg donors’ experiences. I am thrilled WAED will be partnering on this project to help with recruitment and outreach! Egg donors can sign up at weareeggdonors.com/ucsf.

We are now in our second phase of research -- we are hoping to get as many donors to take the survey as possible, and if interested to sign up to be interviewed.

I’m also really excited to be working with you and WAED to expand awareness about the impact of egg donation on women’s lives.