Egg Donor Study: Interview with Dr. Diane Tober
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, and another project on egg freezing. Our co-founder, Raquel Cool, recently sat down with her to interview her about her work. You can check out WAED’s previous interviews here and here.
Q: It has now been seven years since you began your research in egg donation. How has the landscape changed since then?
Wow. It’s been seven years already? And yet I feel like we’re just getting started.
Well, one of the things I’ve seen that has changed the practice of egg donation is the impact of vitrification (egg freezing) on how egg donation is practiced. In 2013, clinics did freeze eggs and store them to some degree, but it was not a widespread practice because fresh eggs were much more likely to produce a pregnancy than frozen, as frozen eggs often did not survive the freezing and thawing process. Now that technologies have emerged that improve the egg freezing process, more clinics and of course egg banks are freezing and storing eggs for later use and distributing eggs from a single donor to multiple recipients (what’s often called a “shared cycle”) rather than one intended parent or couple.
This means, of course, that if clinics and egg banks can have a single donor cycle produce enough oocytes to be distributed to multiple recipients it reduces costs and increases profit for these practices. It also means, in some cases, the clinic may medically push the egg donor to produce more eggs when it might not be in the donor’s best medical interests. Some recruiters have told me that they’ve had donors who produced upwards of 70 eggs, that they then split up into batches of 5 or 6 and made available to many recipients. On the one hand, yes, a single donor who produces a lot of eggs can help more people on their journeys to become parents. On the other hand, however, producing a high quantity of eggs increases risk for the donor, especially for OHSS. This is something donors need to be aware of.
I also know of several fertility clinics that have started “freeze and share” type programs for their egg donors. This is when a donor can donate half her eggs to a recipient and freeze the other half for themselves for later use. Usually these donors are not financially compensated, but the freezing cycle would be paid for by the intended parent(s), which can cost over $10,000 if paid for out of pocket. I think this approach could be really helpful to egg donors who may be concerned about their own future fertility. I’ve spoken to many egg donors who tried to conceive their own child later and struggled, including some who later had low ovarian reserve. Many have told me how they wished they could have their “twenty year old eggs back.” This could be an option for someone who doesn’t need the compensation from being an egg donor and wants to find a way to freeze their own eggs but can’t afford it.
Another thing that has changed, of course, is donor anonymity. Direct to consumer ancestry testing, like 23andMe, has basically blown the lid off anonymous donation. Many donors are now being found by their offspring, or seeking out the people who were conceived from their eggs. Some donors welcome meeting the children they helped create. For others, navigation this process can be difficult. Given that anonymity cannot be guaranteed anymore, it no longer makes sense for clinics to require or promise anonymous donations.
Q: Conversely, what would you say hasn’t changed since you started this project?
One of the things that hasn’t changed much is the way in which “informed consent” occurs in clinical settings and egg donor recruitment. Egg donors still report that their recruiters tell them “the risks are less than 1%.” Yet now there are several published articles out that demonstrate that risk for immediate complications for severe OHSS alone range from about 1% to 15%, depending upon the study. So the information provided in the informed consent process definitely needs to be updated. I recently published an article on egg donors’ perceptions of being informed to illuminate the weaknesses in the informed consent process, as well as what good informed consent might look like.
The other thing that hasn’t changed, of course, is still the lack of long-term studies. I’m working to change that with my own research, and am the only person I know of who--as you pointed out--has been doing this research for the past seven years. But it takes time. It also takes money, and it is very challenging to get funders in the world of infertility to prioritize funding for longitudinal research on egg donors.
Q: Has the focus of your research changed over time? How so?
My research has definitely changed over time. The focus -- on egg donor decisions, experiences, health and well-being -- remains constant. But my methods for conducting research and adding different layers has evolved since we first embarked on this work.
I started this work from my anthropological perspective, interested in how egg donors think about their bodies, fertility, kinship and meanings of genetics in addition to their health experiences. So in the beginning I relied primarily on interviews. I soon realized that in order to also influence decision makers, policy makers, and reproductive health professionals I would need to include quantitative survey data as well. So that’s why I started with designing and refining surveys--to get a lot of data from as wide an array of donors as possible to see if I could find any trends in their satisfaction, health experiences, and so on.
Another way in which my research has evolved is, thanks to some funding, adding different layers. So with my National Science Foundation grant I’m able to compare egg donors’ experiences in two different settings--the United States and Spain--both of which have completely different approaches to regulating egg donation and donor compensation.
Another level I’ve recently added, and am also recruiting participants for, is to compare the experiences of egg donors and egg freezers. I’m interested both in how people may view their fertility at different times of their reproductive lives. But also, I’m interested to find out if egg donors and egg freezers have different clinical experiences, since one is being compensated to provide eggs and the other is paying for a service: Do they have different experiences as patients?
Q: WAED is proud to co-author research with you. What do you think is important for egg donors to know?
Yes, I’m really excited we were able to get 5 posters accepted for presentation at The American Society for Reproductive Medicine meetings this October. Due to COVID 19, unfortunately, the meetings were online rather than in person this year. But it is still exciting to start getting the data from our research in front of this organization.
I think the two most significant presentations for egg donors include:
1. “Frequency and Severity of Ovarian Hyperstimulation Syndrome (OHSS) among Oocyte Donors According to Trigger Type and Number of Oocytes Retrieved.” (Open the poster) The data presented here clearly demonstrates how risk for severe OHSS is higher for donors receiving any amount of hCG in the trigger shot, as well as how egg counts per cycle increase risk for severe OHSS regardless of trigger shot used.
2. “Egg donor perceptions of long-term adverse outcomes.” (Open the poster) This poster includes former donors’ self-reports of their reproductive health one year or more after their last donation. Here, about 40% of donors reported some health condition, but of course we don’t know if there is a connection between the condition reported and their egg donations. We also didn’t see any correlations between the number of cycles or quantity of eggs produced for donors who reported health conditions, which is interesting.
Taken together, I think these two reports can provide donors with some information that can help them self advocate through the donation process, including finding the right questions to ask clinicians. With this information, donors can hopefully advocate for a medication protocol using a Lupron (GnRh agonist) trigger and also raise questions about how many eggs they intend to retrieve.
Q: Having attended the ASRM conference, what were some takeaways for you?
That’s a tough question to answer. Since it was a virtual conference, it was much harder to connect with others than if it had been an in-person conference. That said, one of the main takeaways for me was I see medical professionals and psychologists in this space trying to address some very challenging ethical considerations, including informed consent for donors and gestational surrogates, psychological screening, genetic screening for gamete donors, and so on.
Of course, I attended the ethics-related session most, so that may skew my perspective. I also was able to connect with the other professionals doing research on egg donors--and there are not a lot of them. Most of the research on egg donation focuses on achieving successful pregnancies via egg donation--and we’ve seen this in the research for years--not on egg donors. So there is a definite gap in knowledge when it comes to egg donors.
One presenter addressed the “Top 10 research questions” for fertility professionals. Even in the initial list of over 20 top questions, none of them addressed issues surrounding donor anonymity for donors and donor conceived people, let alone identifying research on egg donor health as a priority. Of course, this priority list has to do with who they asked the questions of--including both professionals and patient organizations (like Resolve) in the infertility space. I, of course, would like to see a broadened scope of priorities.
This “Top 10” list is highly significant, because it is this list that drives the funding priorities for organizations like the National Institutes of Health. And this lack of funding priority is one of the main reasons, I think, that it has been such a struggle to move the longitudinal research on egg donors forward.
Mostly, I’m very excited to be able to share the information from my research in this space, and provide fertility professionals with more information from egg donors’ perspectives.
Q: How can egg donors advocate for better practices of informed consent?
Well, I did just publish an article on this in an online scholarly journal, based on my research findings, so it is accessible to everyone. But to hit some main points, for individual egg donors I would say:
Ask a lot of questions about both risks and benefits;
If the clinic or agency doesn’t answer your questions to your satisfaction, go elsewhere;
For example, if you ask about OHSS and they brush off your question as if it is something that ‘never’ happens perhaps consider going someplace else
Make sure that every step of the way--when signing legal contracts, when going through the donation screening process, when undergoing the medical process, etc.--you feel comfortable with the terms and if not, speak up;
Make sure you know what kind of medication protocol the doctor is prescribing and what your physician will do to prevent OHSS--before starting your cycle.
I would also say, as a collective group, it might be time to reach out to powerful organizations in the infertility space, like Resolve or Men Having Babies, and make more noise about the need for research on egg donors. I would like to see “Research on egg donor and gestational surrogate health and well-being” make that “Top 10 research questions” list.
Q: How does your study differ from other egg donation studies?
There are now a number of wonderful studies on egg donors, including the work of other anthropologists and sociologists. A lot of this work addresses theoretical questions surrounding meanings of kinship and genetic material, cross-border family creation via egg donation, examinations of “race” and justice in egg donation, and what we call the commodification of the body. And I do much of this kind of analysis in my own research.
But my research also has a practical angle: to gather the necessary quantitative data to improve conditions for egg donors, improve informed consent, and gain a better understanding of the potential future implications of egg donation for donors’ health and well-being, including both risks and benefits.
My hope is that my research data can be used to improve the process for everyone, but especially for donors.
Q: What is the best way for egg donors to get involved?
You can sign up for the study here. Or, if you have any questions, reach out to me at: eggdonorresearch@ucsf.edu
Q: So many incredible insights. Grateful for your commitment to researching egg donation. Before we end this interview, is there anything else you’d like to add?
Thanks! I’m so grateful for our continued collaboration and very excited to start getting some preliminary findings out. I’d also like to say that I’m very grateful for some of the fertility and agencies that have helped recruit donors for the study. It’s really nice to see some professionals in the industry invested in research to better understand donors’ experiences and improve egg donor care.
I am also extremely grateful for all the egg donors who have participated in the research!
Q: Thank you so much.