[Editor's note: In a recent blogpost here, Angie Best-Boss wondered aloud about how she'd feel if her daughters made the choice to donate their eggs or to use donor eggs to conceive. In that post, Angie referred to an essay by Jennifer Schneider, M.D., published recently in the ASRM's Fertility & Sterility. We have received permission from Dr. Schneider to publish here that case report, "Fatal colon cancer in a young egg donor: a physician mother's call for follow-up and research on the long-term risks of ovarian stimulation", along with her related opinion piece below...]
Egg Donors: The Forgotten Segment of the IVF Industry
By Jennifer Schneider, M.D.
The phone call from the gastroenterologist across the country was a parent’s worst nightmare. He said, “I just did a CT scan of your daughter’s abdomen, and it’s bad news – she has cancer involving her colon, both ovaries, lymph nodes, and throughout her belly. We think the primary is colon cancer.” He called me first, because he knew I’m a doctor, and wanted some help giving her the results. I knew immediately that her survival would be measured in months, even with the best treatment. Sitting in the airplane a few hours later, I kept asking myself, how could this be? There’s no history of colon or ovarian cancer in her family. She felt fine until a month earlier, when she began complaining of abdominal pain. How could a 29-year old suddenly be diagnosed with far advanced colon cancer?
Jessica was a composer and film maker, and throughout the following months of chemotherapy, surgery, and palliative radiation for bone and brain metastases, she worked hard on an opera she was composing, racing the clock to complete it in time to see it performed. She survived for almost two years, but missed the opera’s opening by three weeks, and didn’t get to read the rave reviews. Jessica was 31 when she died. 
The only unusual factor in Jessica’s medical history was that at age 25 she had been an egg donor. She had been enticed by the ads and posters at her elite university offering large sums for egg donation. She had told me about her plans in advance, and my main concern was her safety. She reassured me, “The agency told me they use a reputable IVF clinic and experienced doctors. They said that other than a small risk of bleeding or infection from the egg retrieval, there’s no problem.” After the first egg retrieval cycle, which resulted in a pregnancy, the agency offered twice the payment for the next because this time she was a ‘”proven” egg donor. A third cycle then followed.
Since her death I keep thinking about a possible connection between my daughter’s cancer and her egg donations. High doses of hormones are used to stimulate the ovaries of infertile women trying to get pregnant, as well as women who provide their eggs to assist infertile women or for stem-cell research. The goal is to produce multiple eggs. Many of the drugs used for egg retrieval have not been adequately studied for long-term safety and have not received FDA [Food and Drug Administration] approval for such use. Could the repeated exposure to high-dose hormones have led to my daughter’s cancer? The answer is, we don’t know.
Because egg donors are young and healthy, their risk of cancer is low, so to obtain meaningful results, large numbers of women must be studied for many years. Records of these women would have to be kept starting at the time of the procedure, and routine follow-up instituted.
Incredibly, this is still not standard practice. Egg donation is usually anonymous, and once the donors provide the eggs, they are of no further interest to IVF clinics. The few published studies have all been retrospective, that is, finding women who have had ovarian stimulation in the past and obtaining information on their health. So far some studies have shown slight increases in uterine cancer, breast cancer, melanoma, and thyroid cancer. But because the numbers of cancer cases were small and the time elapsed since egg retrieval often short, results were inconclusive.
In 2001 the Ethics Committee of the American Society for Reproductive Medicine called for further study of the medical and psychological effects on donors and suggested that every donor should have a physician whose primary responsibility is caring for her.
In 2003 alone there were about 13,000 assisted reproduction cycles involving oocytes (eggs) provided by egg donors in the U.S. Thousands of young women are selling or donating eggs despite the absence of data that would allow them to make informed decisions about their risks. Most of them do not understand that there is a huge difference between being told “We don’t know of any significant long-term risks” and “There are no significant long-term risks.” In the U.S., college students especially are recruited to become donors by posters offering large financial incentives. And now the use of oocytes for stem-cell research further increases the demand for egg retrieval.
In September 2006, the Institute of Medicine (IOM) and the National Research Council of the National Academies of Sciences (NAS) organized a workshop of experts on the risks of assisted reproductive technology. Their 2007 report concluded, “There are no registries that track the health of the people who have taken part in IVF, and much of what is known about the risks for women participating in IVF [i.e. infertile women seeking pregnancy] may not be directly applicable to oocyte donors. . . . It will be important in the coming years to accumulate extensive health data for women whose eggs are harvested and to monitor them for long-term effects.”
Despite repeated calls to action, very little has been done, for obvious reasons, chief of which is the conflict of interest that IVF clinics and researchers have in balancing money and multiple eggs per retrieval versus the health of the donor. IVF clinics are cash cows, providing lucrative returns and often funding academic departments and organizations with which they may be associated. Stem-cell researchers who use oocytes are concerned primarily with maximizing the number of eggs they obtain. Additionally, many egg donors, especially college students who use the payment for tuition, may want to remain anonymous and not be on a registry. Finally, long-term prospective studies are expensive. Registries and studies will probably never happen until one or more government agencies mandates keeping track of egg donors and funds the research.
I am very much in favor of IVF, which makes it possible for many families to have children when otherwise they would be unable to do so. But we need to know with greater certainty what the risks to the egg donors might be. Jessica did not have such information when she made her decision. Only when the studies are finally done will young women who are considering egg donation be able to make truly informed choices.
