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Tuesday, October 13, 2015

‘The Perfect Donor’ Film and the Complexities of Commercial Egg Donation – An Interview with Medical Anthropologist Diane Tober, Ph.D.

Commercial egg donation is a growing industry around the world with varying governance and legalities by country. Many women who’ve not been able to conceive but want to experience pregnancy and childbirth turn to egg donation. It is commonly used by couples in which the woman has poor quality or no eggs, but who want a biological child using the male’s sperm, women with no ovaries but an intact uterus, women with genetic factors that they don’t want to pass on to their children and women over the age of 39. It is also utilized among same-sex couples. The first known pregnancy achieved with a donated egg occurred in 1984. Today, more than 10,000 babies have been born worldwide from donated eggs, yet there are many complexities with the process and women who donate do so at a risk to their health.

Interim Executive Editor Jessica Buchleitner spoke with Medical Anthropologist Diane Tober, Ph.D. about her forthcoming documentary “The Perfect Donor” and the complexities of the commercial egg donation industry around the world.

Jessica Buchleitner (JB): Tell us a bit about commercial egg donation in the U.S. and globally. How prevalent is it? What are the dynamics and how do the conditions vary?

Diane Tober (DT): There are about 18,000 cycles using fresh donor eggs per year in the United States. People who use donor eggs include women who are no longer fertile themselves (either due to age, premature ovarian failure, or cancer treatment), or gay couples and single men who use an egg donor and surrogate to have children.

In the United States, the American Society for Reproductive Medicine has established a guideline that donors should not be paid more than $10,000 in order to avoid women doing it just for the money, which could be considered coercive—especially to lower-income women. However, in practice the amount an egg donor is paid varies widely. I have heard as low as $1000 in the U.S. to as high as $250,000 for a woman with certain characteristics. Often, women who are more attractive, have higher education, and have traits that couples consider desirable are paid more.

Also, women who are “proven donors”—that is they already have helped someone achieve a pregnancy—can ask for higher pay. In some cases, a woman who is paid $7500 for her first cycle, may be able to get over $10,000 for her second cycle if a pregnancy was achieved. Women often do this numerous times. In the U.S., ASRM guidelines state that she should do no more than six egg donation cycles, in part to limit the number of children per donor, but also due to potential health risks. In fact, many women go way beyond six cycles—especially when they’re donating at numerous different clinics, or internationally. There are no registries to track donor cycles, so there is really no way of knowing.

In other countries where paid donation is legal (like Spain) payment is capped at 1,000 euros. In the United Kingdom, South Africa and Australia, paid donation is highly restricted: in some cases donors must already have children of their own, they’re paid around the equivalent of $800, and in some cases must agree to have their identity released. In Spain, anonymous donations are required. In other countries, like Germany and France, paid egg donation is not permitted.

The U.S. is a major global destination for egg donation due to the restrictions in other countries. India and Thailand also used to be major destinations for fertility treatment with egg donation and surrogacy, but recent changes in laws in both countries now ban access for same-sex couples and single people wanting children. This has led to new destinations opening up, like Cyprus and Mexico, where the costs of fertility treatment and donor eggs is much lower. The United States is the top destination for fertility travel for people who can afford it. And Spain is the top European destination for heterosexual couples. However, Spain also does not currently permit surrogacy, so gay couples from Spain typically go to the U.S. for egg donation and surrogacy.

People from all around the world—Japan, China, Dubai, Europe, Africa, and so on—come here for women’s eggs. Egg donors (I actually like to call them “egg providers” since they are not really donating if they’re getting paid) also travel from other parts of the world to provide eggs here. So you have people traveling from all around the world—egg providers and intended parents—to go through the process here, or in other countries. Another challenge raised by all of this is the children born through surrogacy in some countries and not being recognized as citizens in the countries where their intended parents reside; this results in a number of kids being born stateless. But that is a separate issue.

JB: Why do women decide to donate? What do they receive?

DT: Women provide eggs for others for many different reasons. First, there is the financial aspect. Many college women in the U.S., for example, cannot afford the ever-increasing college tuition and other expenses, and resort to egg donation in order to support their education. I think it is atrocious in this country—with so much wealth—that some women feel they have to resort to essentially selling a piece of their body in order to get an education. In Spain, where the cost of a university education is only a few hundred dollars per year, you do not see college women deciding to become egg donors like you do here. In Spain, until the economic crisis, it was primarily immigrant women who were providing eggs. Since the economic crisis, though, you now have more Spanish women providing eggs in order to meet expenses. Again, in the U.S. the price for women’s eggs varies widely. In Spain, it is capped at 1,000 euros.

Another reason is the desire to help other people create a family. Most of the women I’ve talked to really enjoy the feeling they get when they know they’ve helped someone achieve something they wanted so badly—having a child—but couldn’t do on their own. So that altruistic component is really there for most women; it’s considered a “win-win” getting paid to help someone else create a family. Most U.S. agencies and clinics also know how much it means to the egg provider to know they’re helping someone else. Often, they give the donors letters from the intended parents thanking them for their “gift”, or tell them heart-breaking stories about the intended parents (such as having had cancer, or having multiple miscarriages) that really touch the donor on a deep emotional level. When women read these letters, it’s hard for them to say “no” when there is another woman or person out there who needs their help to have a baby.

Some women decide to provide eggs to others for more personal reasons; for example, if they were a child born from sperm or egg donation, if they know someone who has experienced infertility, or in cases where they’ve had an abortion and have conflicted feelings about it. Reasons vary, but the most common are a combination of wanting to help someone else and financial need.

JB: What happens to them when they do? What is the process? What kinds of medications do they take? Are there side effects?

DT: The process varies widely between agencies and clinics. Some have a very thorough screening, and others you just fill out an online profile. Typically, first the prospective egg donor goes through a screening process, which involves filling out paperwork with health history and other information, and then usually (but not always) includes meeting with a genetic counselor, and a psychologist who screen for genetic issues and psychological red flags.

If they go through the screening, then they’re put in the database where they can be selected by prospective parents. Once chosen, the egg provider is put on oral contraceptives in order to time her cycle with either the intended mother or surrogate.

After several weeks, she starts injecting hormones in order to produce more eggs than a woman would normally produce in a cycle. Typical drugs used throughout the cycle include Gonal, Menopur, Lupron, and HCG. Different physicians have different medical protocols that they use in this process. Throughout this time, the donor visits the clinic regularly for blood tests and for vaginal ultrasounds that monitor how the eggs (follicles) are developing.

If a woman is producing too many follicles, ideally the physician should reduce the amount of medication she receives, in the interest of her health. However, some physicians use a more aggressive drug protocol than others, which can have a direct effect on a woman’s health, including increasing the risk for what’s called Ovarian Hyperstimulation Syndrome (OHSS). Some of the women I’ve spoken to have ended up in the hospital with OHSS. OHSS includes extreme bloating, and can lead to kidney failure, collapsed lungs, and other life-threatening complications. It can also lead to the ovary twisting inside the woman’s body, requiring it to be removed.

JB: What is the demographic profile of the average intended parent? Who receives the eggs?

DT: Anyone can experience infertility, regardless of race, class, or age. But egg donation is only accessible to those who can afford it. A typical cycle using donor eggs in the U.S. can be over $30,000-$45,000 per attempt, depending upon the fees for the donor. Frozen eggs are usually less, but they don’t have the same success rates. In many other countries, the cost of an in vitro fertilization cycle using donor eggs is between $6,000-$12,000, plus travel costs. So it is usually upper middle class people who can afford this as an option to create their families.

JB: What is the long term impact of egg donation on women who donate? What are the risks they are not aware of?

DT: In India, there were several young egg donors (17 and 19) who died from OHSS. At a conference I attended recently, someone told me of a young donor in Illinois who died of OHSS last year. According to a report by the HFEA (Human Fertilisation and Embryology Authority) OHSS is the number one cause of maternal death in the UK among women undergoing stimulation for their own infertility treatment.

Ideally, a woman is supposed to produce between 10 and 20 eggs per cycle. However, many women end up producing far more. Most women I’ve spoken to in my research and in my film interviews produced well over 20 mature oocytes. The highest I’ve heard in the women I’ve interviewed is 80. The greater the number of eggs, the greater the risk, because when the eggs are removed the empty follicle sacs fill up with fluid. There are different medical protocols that some doctors use to reduce OHSS risk (like using Lupron as the final shot to help release the eggs), but not all doctors use this method, and Lupron also has its own side effects.

The side effects related to all of these hormones have not been well studied. While some research demonstrates their safety; other research points to increased risk for gynecological cancers, endometriosis, and other complications like rashes and auto-immune problems. One of the donors in my film was diagnosed with a rare form of cervical cancer at 25, within a year-and-a-half following her third donation. Another young woman and former egg donor died of colon cancer at the age of 31. Brittany Maynard was 29 when she ended her life in Oregon. She was a former egg donor and was diagnosed with an aggressive brain cancer (glioblastoma).

Perhaps these are just anecdotal stories, but many of these cancers are also hormone dependent. And since the research has not yet been done to investigate the long-term impact of these drugs on women’s health, there is no way of determining a causal connection. However, we do know that with a Women’s Health Initiative study on hormone replacement therapy (HRT) in menopausal women, women in the HRT group were getting cancers and strokes at a dramatically higher rate than the women not on HRT. The rates were so alarming, they ended the study. It is not too far-fetched to think that the drugs used in fertility treatment would also impact women’s health.

In addition to the risks from drugs, there are also risks involved with the procedure to remove the eggs from the donor’s body. It involves surgery under anesthesia, and although rare, I have heard of cases where women have had arteries nicked and were bleeding internally after surgery, and they had to insist that the physician admit them to the hospital to figure out what was wrong. One woman I talked to almost bled to death internally, and the doctor didn’t take her seriously when she said something was wrong.

When women are thinking about becoming donors, they are usually told the risks are “rare”, less than 1 percent. But there is really no data to base this on. There is some data in the Center for Disease Control, but this is all on women going through the same process for their own fertility treatment, and isn’t applicable to donors who are much younger, and who may be more sensitive to the medications. Also, when women do have complications they don’t always report them to the clinics, and the clinics do not always report them to the CDC, so there is really no way of knowing what the actual risks are. So far, in my research, about 35 percent of the women I’ve spoken to (out of 40 women) have had at least moderate complications. 11 percent have had serious complications like OHSS, endometriosis, infertility following donations, and cancer. We really need more research and long-term health data on women going through these drugs and procedures.

JB: In your documentary trailer, one of the women explained that her donor was offered a quarter of a million dollars for the donation. Another donor mentioned that her eggs would be “picked quickly” because she was white. Is this a form of eugenics in its own way? How could you perceive egg donation to potentially become highly specific?

DT: Well, yes, in some ways it is. When people are choosing a partner, they typically choose someone they’re attracted to, with similar education, religious, socio-economic, and ethnic backgrounds. When people choose donors, these factors also come into play. Most people want a donor who is like them, who they feel a connection with, and someone who looks like them and/or their partner. For infertile women, going through infertility treatment and failing month after month, it is a huge loss. I think many women in this situation feel like they want some semblance of control, like they can find someone like themselves, or someone like themselves but better. This loss is not the same for single men and gay couples attempting to create their families through egg donation, but I think across the board prospective parents often feel like since they’re paying so much money for this process, and to have a child in this way, that they can get very particular about their requirements for the genetic parent of their child.

Across the board, blond hair and blue-eyed women go pretty quickly. There is a high-demand for Asian donors due to some cultural taboos in many Asian communities. Most people want very intelligent or very pretty or both. So yes, there is a ranking of people monetarily based on their characteristics, and then you have the so-called “elite” donors. Also, most often, intended parents prefer someone with lighter skin. In India, for example, light-skinned donors are in high demand. Although, I have also interviewed a woman of African descent from Barbados who was popular among Caucasian couples, but she also had a medical degree and had been a model.

In Spain, where the physicians select the donor and the intended parents do not even typically see a photograph, this process is very different. Because people in the U.S. can shop around for their “Perfect Donor” it leads to this entire market where eggs become commodities with different economic value. In Spain, physicians typically look for “Spanish-looking” donors for their patients, but you do not get the same kind of tiered ranking you get here.

JB: You have commented that egg donation and reproductive travel is the next form of human trafficking. How so?

DT: I have not had the opportunity to fully investigate this yet, but I plan to. I think in many clinics around the world you have responsible physicians who care for their donors as more-or-less equal to their paying infertile patients.

However, whenever there is money involved there is also the potential for abuse. The fertility industry is a multi-billion dollar per year international industry. There is a lot of money being made in women’s eggs—on the initial donation, as well as if a woman’s eggs are frozen and then sold to other couples down the road. There is also an “after-market” of eggs being sold to researchers, at times without a woman’s consent. And the clinics collecting, freezing and banking the eggs stand to make enormous profits.

Women travel from all around the world to provide eggs in different destinations and most, probably, receive decent medical care. However, I have also heard of women being sent to other locations, for example from Romania to Cyprus, undergoing a quick surgery to remove their eggs and being put right back on the plane within hours after their surgery. If a woman has complications in this situation, she has no one she can go to. So, for example, if a woman from Romania gets OHSS after donating at a clinic in Cyprus, this does not count against that clinic’s statistics because her symptoms will not become apparent until she’s back home in Romania, where she has to be tended to in the Romanian health care system. Journalist Scott Carney has written about this in his book, “The Red Market”.

I suspect that when you start to take a look at the international landscape of women traveling to and from different countries to provide eggs in other countries, things become much more complicated. I also suspect that on the international landscape, you have women from much poorer countries being sent to other countries by the clinics or commissioning parents for the procedures. Thus what you end up having, like you do with organ donation, is poorer people being sent around to meet the needs of wealthier people, further expressing the global dynamics of wealth and poverty. However, with egg donation—because you will produce children with the characteristics of the genetic mother—there is a tendency to seek out women with fairer skin and more European traits, for the most part. With international black market in human organs, skin color and other outward traits (like eye color) are not an issue.

I have also heard a variety of scams and scandals in the U.S., India, Thailand, South Africa, and other locations, of either intended parents not getting the donor they thought they paid for, or even donors not getting paid after going through all of these really difficult procedures. So I think it’s a fine line when reproductive tourism or fertility travel crosses into the realm of egg trafficking.

India, for example, is the number one country in the world for travel for egg donation and surrogacy. Many of the women who provide eggs and wombs are poor, and from villages, and some even illiterate and not able to really understand the process or risks before undergoing the procedure.

I also have one donor who went to Thailand to donate her eggs, thinking it would be an adventure. It turned out the Thai doctor she went to at All IVF was also investigated for an international scandal with a Japanese business man who had over 17 children created through egg donation and surgery. While the scandals may not be the norm, they do point to the propensity for abuse in the current system with women being paid for their eggs. However, women also go through enormous sacrifice and risk to provide eggs for other people to create their families; who is to say that they should not be compensated for their time and trouble? It’s complicated.

JB: Are the women who donate allowed to see the babies they help produce?

DT: Sometimes the agency or clinic will let the donor know when a pregnancy or live birth is achieved. But often, the donor receives no information as to the outcome of her donation. Sometimes egg providers and intended parents are able to learn of each others’ identities; sometimes egg providers agree to have their identities released when the child reaches 18; sometimes they are completely anonymous; and sometimes intended parents and donors actually meet before the procedure. It is really on a case-by-case basis. In the East Coast of the U.S., it is much less likely that donors and intended parents will have an open donation; on the West Coast this is becoming more the norm. Internationally, because you have so many different cultures entering into this process together, and so many different laws in different countries, it really depends. I do know, though, that when donors find out about a positive pregnancy, they can be overjoyed to know that their efforts helped someone else achieve their dream of having a family. I also know that even among donors who have medical complications following the process, that finding out about the positive pregnancy or live birth can make their own sacrifice seem worthwhile.

JB: Can you give us a synopsis of “The Perfect Donor” film? What can we expect to see?

DT: “The Perfect Donor” is about how young women are recruited for the high-demand market in women’s eggs. This film takes place primarily in the U.S., and explores how women are recruited, why they decide to become donors, and what happens to them in the process. While some women are overjoyed to help others create the families of their dreams; others find that the money they made from their eggs comes at a much greater cost.

For the film, we interviewed agency recruiters, fertility physicians, genetic counselors, psychological counselors and other professionals, but the film mostly follows seven egg donors and their emotional and physical journeys through the process.

JB: What other projects do you have coming up or any other research on egg donation?

DT: Well, I’m working on a research project at University of California San Francisco (UCSF) to explore egg provider decisions and experiences. For this project, I’m also collaborating with We Are Egg Donors—an online international egg donor advocacy organization. I’m also collaborating with people in the industry to help recruit donors for the research. Our goal is to not necessarily ban egg donation, but to find ways to improve the process for everyone involved—but especially for egg providers.

I’m also planning a collaborative project comparing egg donors’ experiences in the U.S. and Spain, since both countries permit paid donation, but have very different regulations surrounding the procedure. We’re hoping to secure funding to move forward with that project.

Also, aside from the film, “The Perfect Donor”, I’m in the planning stages of two other documentary films: one on international donation, called “Cycling Abroad” and another on egg freezing and the conflicts working women face when trying to balance work and family.


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