Research and follow-up of egg donors has been pretty non-existent — until now. The Donor Sibling Registry, which connects and supports donor families, is conducting a survey of egg donors for the purpose of qualitative research on the long-term health effects on women.
DSR founder Wendy Kramer explains:
We at the Donor Sibling Registry are doing a study of former egg donors. Some of you may have registered on the Donor Sibling Registry and some of you have not yet, or do not intend on making yourself available for contact from families that may have used your eggs. Either way, our goal is to get a better understanding of how egg donation affects women as time goes on, as we know of no medical studies or formal research on this topic. Based on the replies, we hope to write an article for a scientific journal.
Your answers will be kept anonymous, as I will only share the collective data, and no one’s personal information. This information could be extremely valuable in pushing the medical community to further investigate how egg donation physically affects woman who donate. The questions should only take a few minutes to answer.
Plus: Our Bodies, Ourselves has published a collection of articles that examine whether and how the risks of egg donation have been underplayed, and what regulations are needed to better ensure that the long-term consequences of donation are better understood and that donors are provided the information they need to give informed consent.
And here you’ll find the comments of Jennifer Schneider, M.D., who appeared before a 2007 Congressional briefing on human egg trafficking and urged Congress to mandate egg donor registers. Schneider’s daughter donated three cycles of eggs and was diagnosed at age 29 with advanced colon cancer. She died two years later. Here’s an excerpt of Schneider’s remarks:
Her death was unexplained. When she was first diagnosed, the first thing she – and I – thought of was could it have been the large doses of hormones she received for the egg retrieval. Jessica asked her oncologist, who told her that there was no evidence supporting a role of ovarian hyperstimulation in causing colon cancer.
But last year I ran across an article by Dr. Kamal Ahuja, a specialist in in vitro fertilization (IVF), that described a young woman who donated eggs for her infertile sister, and a few years later was diagnosed with advanced colon cancer and died. This got me thinking seriously about the possible role of ovarian stimulation in causing her colon cancer. I began doing a lot of reading, and communicating with specialists in the field. What I learned was very disturbing. Here is what I learned:
* Egg donors are commodities
* Long-term risks of egg donation are unknown.
* IVF clinics and researchers have a serious conflict of interest
* The government needs to intervene.