Testimony by Jennifer Schneider, MD to the California Senate Health Committee re AB 926
My name is Jennifer Schneider. I’m an Internal Medicine physician and the mother of a Stanford student egg donor. I would support AB 926 if it did what its authors claimed, but it does not.
I’m concerned about increasing the number of women who go through egg donation because of what happened to my daughter. Jessica was an honors student – 6 feet tall, athletic, beautiful, artistic, a non-smoking vegetarian. [Show her photo] One day, she phoned to tell me she decided 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 one cycle without problems; in fact, she did it 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. She was 31.
After her death I published a 2008 paper in Fertility and Sterility, 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, 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.
In 2013, we know that in addition to the short-term risks of Ovarian Hyperstimulation Syndrome:
- taking hormones increases the risk of several types of cancer
- infertile women who also get hormone treatment have an increased risk of cancer
- Jessica is not the only documented case of colon cancer in a young egg donor
- there are reports suggesting an increased long-term risk of infertility after hormonal stimulation.
But we don’t know anything about the possible long-term risks for young women who go through this arduous procedure.
AB 926 claims to create protections for research subjects
This bill will not accomplish this goal, because young women cannot give informed consent because information about long-term health risks doesn’t exist. It didn’t exist for Jessica, it doesn’t exist now, and this bill does not require it. Before expanding the market in human eggs, let’s follow-up current egg donors and collect their health data, so that real informed consent will be possible. I’m all for research, but not at the risk of the lives and health of more young women.