My name is Jennifer Schneider. I’m an Internal Medicine physician, who lost my daughter, Jessica Grace Wing, to colon cancer when she was 31 years old. Jessica was a non-smoking vegetarian and a tall, lean, beautiful, athletic, and musically talented Stanford University honors student when she decided to donate her eggs to help pay for her education. Through her multiple donations, five healthy children were born to three formerly childless families.
Because of what happened to my daughter, I am concerned about increasing the number of women who undergo egg donation. When Jessica phoned to tell me that she had decided to donate her eggs, she said, “Don’t worry Mom. They told me there’s a small risk of bleeding and infection, but otherwise they haven’t found any problems.” So she went through one egg donation cycle without problems, and because she was thereafter offered twice as much money for her eggs, she donated twice more in the next few months.
About seven years later, Jessica was diagnosed with colon cancer, a disease no one in my family had had. Two years later, after chemotherapy, surgery, and radiation, she died at the age of 31. Given that Jessica had been a health-conscious young woman with no family history of colon cancer or genes associated with this disease, I wondered if the extensive hormone treatments she had undergone when donating her eggs might have stimulated growth of the cancer, and if other egg donors might also be at risk.
Unfortunately, as I soon discovered, it was impossible to know if there was any link between egg donation and cancer, because no one was keeping track of the medical or psychological fate of egg donors. Once donors walk out the door, they are lost to medical history. When considering whether to undergo a medical procedure, one may be told “there are no known long-term effects.” But unless such effects have been systematically studied, that does not mean there are no long-term effects.
After Jessica’s death, I published a paper in Fertility and Sterility in 2008, the official journal of the American Society for Reproductive Medicine, entitled, “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.” I wrote it because I was shocked to learn that no one had ever studied the potential long-term risks of egg donation, and especially the risks of the high-dose hormones given to healthy young women.
Unlike infertile women who are considered patients, egg donors are treated as vendors. When they walk out of the IVF clinic, no one keeps track of them. My daughter’s death was not reported. The long-term risks of egg donation are unknown.
I began vigorously advocating for establishment of an egg donor registry that could benefit not only the thousands of healthy young women whose eggs help others get pregnant, but also the growing number of women who want to postpone pregnancy and choose to have their eggs frozen for future use.
In 2020, we know that egg donors are at greater risk of ovarian hyper stimulation syndrome—a response to taking the medicines used to make eggs grow which can result in blood clots, shortness of breath, abdominal pain, dehydration, vomiting, and sometimes death. We also now know that the hormones taken by egg donors increase the risk of several types of cancer. Jessica is not the only documented case of colon cancer in a young egg donor. There are also reports suggesting an increased long-term risk of infertility faced by egg donors after hormonal stimulation. But we don’t begin to know all of the possible long-term risks for young women who go through this arduous procedure.
Seventeen years after my daughter’s death, there is still no one tracking the fate of egg donors. The Centers for Disease Control and Prevention collects information on in vitro fertilization, but not on those who donate their eggs.There are not even reliable data on the number of egg donors.
Earlier this year, in Reproductive Biomedicine Online, I and two co-authors reported on five cases of breast cancer among egg donors, four of whom were women in their 30s, and all five of whom had no apparent genetic risk for the disease. None of the women had been given any information about long-term risks of egg donation, again because no such “known” information exists.
We acknowledged that single cases do not definitively establish whether hormone stimulation of egg donors increases the risk of various cancers, but we also reiterated the need to create egg donor registries to facilitate long-term studies of egg donors.
With this long-term registry data, it would be easier to tell if egg donors are more susceptible to these illnesses, or if they tend to get them at a similar rate to the population at large. And that is what is needed in order to find out what these risks are, so women considering egg donation can make informed decisions.
Right now, young women agreeing to egg donation cannot give informed consent because information about long-term health risks doesn’t exist. It didn’t exist for Jessica and it doesn’t exist for anyone now.
Legalizing commercial surrogacy will necessarily greatly increase the demand for egg donation. Before expanding the market in human eggs, it’s vitally important that we follow-up with current egg donors and collect their health data, so that real and meaningful informed consent will be possible. Until the health consequences are known and understood, it would be unconscionable to legalize a practice that will greatly increase the demand for donated eggs, and risk the lives and health of many more young women.
Email exchanges and telephonic interview conducted with Dr. Jennifer Schneider