Strollerderby
Exploited and Discarded? Seeking Protection for Egg Donors
The new parents beam, the babies gurgle and coo, and People magazine takes a picture of yet another family made possible by egg donation (you don’t think all those 45-year-old actresses are just having twins by some crazy coincidence, do you?). But what happens to the woman whose biological material helped make it all possible? Her job done, the egg donor typically recedes into the background, a check for $5,000 (or more, or less) in her hand, gone without a trace.
Now some former donors and other advocates for women’s health want that to change. While the Centers for Disease Control keeps track of the number of eggs donated to women facing infertility — it was more than 15,000 in 2006 — the donors of those eggs, and information about their health after serving as donors, is not followed in any way. Given that egg donation involves treatment with powerful hormones, many of which carry at least some cancer risk, the lack of follow-up and systematic tracking bothers many.
“Right now egg donors are treated like vendors, not as patients.
Patients need to be followed up,” Jennifer Schneider told Time magazine. Schneider, a doctor, has become a critic of the way donors are treated ever since losing her own daughter, who donated three times and died of colon cancer at 31.
Even worse, many egg donors appear to lack basic information about even the short-term health risks they’re taking on when they agree to donate. From the Time article:
In an article published in Fertility and Sterility
in November 2008, researchers found, for example, that 34% of former
egg donors didn’t recall being aware at the time of donation of the
risk of ovarian hyperstimulation syndrome, the most common side effect.
The majority of donors experience at least the mild or moderate form of
this syndrome, which involves discomfort, bloating or nausea and
usually resolves itself on its own. The severe version of this syndrome
is rare – only 100 to 200 for every 100,000 women – but its
consequences can include kidney failure
and death. And then there are other side effects, such as bleeding,
infection and death, which are associated with any surgery performed
under general anesthesia. But fully 20% of the 80 donors interviewed said they didn’t know there were any physical risks to egg donation at all.
With a growing number of families seeking advanced reproductive technology, and an increasing number of willing donors (motivated at least in part by economic woes, some clinics are reporting a jump of over 50% in the number of prospective donors over last year’s numbers), egg donation isn’t going away. But it’s time to stop treating it as a simple exchange of money for risk, or even money for genetic material. Donors need more information, and clinics need to not only make sure they understand the risks but provide follow-up healthcare, as well as tracking outcomes so that future medical professionals — and donors — can understand the actual long-term risks. Right now there are no credible studies that can assess those risks — the most frightening aspect of which is uterine cancer — because no registry has ever existed.
Currently the American Society for Reproductive Medicine is consulting with fertility docs on a nonprofit, voluntary registry of both egg and sperm donors, but as recent controversies have made all too clear, self-regulation isn’t a strength of the fertility industry (really, of any industry). One hopes that the parents who benefit from the technology that brought them babies will also remember the generosity and courage of the women who provided their eggs and push their clinics for better care and research — and contact their political representatives to ask for the same from our government.
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9 Comments
Anonymous commented on Jan 01 70 at 12:00 amThe risks of egg donation should be identical to the risks of undergoing IVF with your own eggs, only minus the risks involved with pregnancy. The risks come from the ovarian hyperstimulation and retrieval, which patients of both kinds experience. The ultimate fate of the eggs isn’t medically relevant. So, it’s not quite true that this problem hasn’t been studied.
Having said that, I do think keeping track of egg donors (with their consent) is a good idea.
Anonymous commented on Jan 01 70 at 12:00 amMost mothers via egg donation have experienced multiple unsuccessful IVF attempts themselves before turning to egg donation. I was 29 years old when I was told that I would likely never conceive on my own, and endured seven rounds of IVF attempts using my own eggs before conceiving with donated eggs. At my clinic, the risks, including hyperstimulation, were explained in great detail to me, as well as to all donors. Each night as I endured another round of injections, I knew that somewhere out there, another woman, was doing the same so that I could be a mother. Our protocols differed when I was the recipient, but I had experienced what the donor was experiencing many times before. I am profoundly grateful to the egg donors, and feel a bond of shared experience with them.
Anonymous commented on Jan 01 70 at 12:00 amAlice,
You obviously have not had problems conceiving. And for that you should be grateful.Our children were conceived using donor sperm. They wouldn’t be here if some young med student didn’t decide to donate.
While there are obviously risks to egg donation, there are none for sperm donation. And if someone wants to donate, great.
I will be forever grateful to the man who donated.
katekilla commented on Jan 01 70 at 12:00 amMarna, I’m sorry if I sounded glib. I know that mothers who use donor eggs are intensely grateful to have been able to have babies, and I’m sure their gratitude extends to the doctors and the donors who help make it possible. I’m sorry if my tone was off there.
But I do worry about what happens down the line — you say you are happily raising your child 8 or 9 years later, which is wonderful. But what if an egg donor is battling cancer 8 or 9 years down the line — should we as a society, which benefits from advanced reproductive technologies, also pay some attention to what happens to donors after they donate? Should we gather information that will help us understand and then communicate the risks involved? I think we should.
So that’s all I’m trying to bring up with my post. But I didn’t mean to make it sound as if moms via donation are ungrateful; I have a few friends who have had their children with the help of donor eggs, and I know how they feel about it.
Anonymous commented on Jan 01 70 at 12:00 amI think it should be illegal. Sellign human bodiy parts is just creepy to me. If it is illegal to sell a kidney why not eggs? Besides, those eggs dont save lives.
Anonymous commented on Jan 01 70 at 12:00 amI was very happy to read this blog, Kate. A few years after my daughter Jessica’s death from colon cancer at age 31 after donating eggs 3 times, I came across an article in a British reproductive medicine journal describing a case just like Jessica — a young woman who donated eggs and then died a few years later of colon cancer. That was the beginning of my ongoing efforts to encourage the creation of a mandatory egg donor registry in the U.S., which is the first step to being able to follow up egg donors for many years in order to learn whether being given all those hormones to stimulate production of many eggs increases their risk of any cancers. I have done 2 Congressional briefings on this subject. You can read a summary of my briefing at: http://www.geneticsandsociety.org/article.php?id=3820
Anonymous commented on Jan 01 70 at 12:00 amI support education and I think any clinic who doesn’t educate its egg donors on the risks shouldn’t be in business.
With that being said my former clinic did inform its egg donors about what they would be enduring, the medications, the injections, the procedure, what to expect afterward. My former clinic also contacts each egg donor to make sure they got home okay — and they call each day, and have an egg donor come in for a follow up appointment to make sure they are okay. Just like any other patient who goes through a surgical procedure.
And last but not least — being a mom via egg donation I get a little resentful when I see statements like this made:
“One hopes that the parents who benefit from the technology that brought them babies will also remember the generosity and courage of the women who provided their eggs and push their clinics for better care and research — and contact their political representatives to ask for the same from our government. “
OF COURSE I am grateful, and OF COURSE I remember the generosity that came from my egg donor. Without her eggs I wouldn’t have my son. But I also recognize and she does as well that she was paid several thousand dollars and she knew going in the front door what she was going to do, and what it entailed. In no way was her generosity minimized, and our gratitude for her continues. But there comes a time and a place when now 8 almost 9 years down the road, it is what it is, and our life has gone on and we are raising our son — I am sure her life has gone on, and she’s probably married, with kids of her own.
I am sorry so very sorry that Dr. Schneider lost a child, no one should ever have to go through that. As a parent my heart breaks for this woman — and I too would want to discover what caused my child to develop cancer.
Anonymous commented on Jan 01 70 at 12:00 amI would also like to see this. I was an egg donor three times and feel that donors should be tracked. It’s important that better information be gathered about the outcomes of those who are donors. I was fully advised of all risks and was educated enough to already have that knowledge, but it’s important that the long term effects of donors be made known.
Anonymous commented on Jan 01 70 at 12:00 amI would love to see this happen. Especially since I’ve considered donating eggs, and there’s a lot of anecdotal evidence about cancer risk that scared me out of it. I want to know just how much risk there really is, because I’d really like to donate, but the idea of ovarian cancer is just too too scary.
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