ASRM consanguinity egg donation elephants FDA registry

Sorry Charlene, you’ve filled your quota…

By on November 12, 2009

The industry’s talked about it. Patients are talking about it. Wendy Kramer took the bull by the horns and created a donor – sibling registry because at the time no public outlet existed for mutual consent contact between people born from anonymous sperm donation or egg donation. And so Wendy started her website which became an organization to help make those connections.

As I was having an exchange with another recipient parent she made the remark that there needs to be some something more, something that protects the egg donor and recipient alike. – Something that is simple that can receive information about a potential egg donor and either give the egg donor the green light to donate or spit out: “Sorry Charlene, you’ve filled your quota”

It’s more than bothersome to read about egg donors who lie to their care providers about the number of previous donations. Actually, it’s downright scary. Medical professionals really don’t know how many times an egg donor should take stim meds, and undergo retrievals. There’s no way of telling how many times an egg donor has cycled unless she’s honest. It’s not like a clinic can leave a little time and date stamp on an egg donors ovaries showing they’d been there.

Currently, there are no standards set by the ASRM to track donor participation in programs that would ensure compliance. Essentially, each clinic sets its own standards. Limits to the number of times a donor may donate are related more to the concerns regarding the repetitive use of fertility drugs, hyperstimulation, anesthesia, and oocyte aspiration. Presently, most programs limit donors to six cycles in an effort to safeguard them from procedural risks – how they selected the number “6” is beyond me.

And then of course there is the issue of “Inadvertent Consanguinity” (referring to the property of being from the same kinship as another person – in other worlds being half siblings and not knowing it)
ASRM states that Inadvertent Consanguinity resulting from oocyte donation could occur if: [1] a given donor has donated to two or more families and [2] the offspring were unaware of their specific genetic heritage. (This is why folks it’s imperative to be honest and tell your child early and often the truth about their origins) Previous guidelines on therapeutic donor insemination and oocyte donation, published by the American Society for Reproductive Medicine, have advised an arbitrary limit of no more than 25 pregnancies per sperm or oocyte donor, in a population of 800,000, in order to minimize risks of consanguinity. This suggestion may require modification if the population using donor gametes represents an isolated subgroup or the specimens are distributed over a wide geographic area.

Honestly, I am not as concerned about “IC” than I am about the egg donor undergoing repetitive stim cycles and retrievals. I can remember in the 80’s when “herpes” made its debut and it was the gift that kept on giving. We all thought it was a wretched and horrible thing to receive from an intimate partner. And then HIV reared its ugly head and that’s when we all literally started playing for keeps. Instead of couples running to the doctor for that all mighty blood test that was required to rule out Syphilis (which prior to the emergence of HIV, was the most deadly venereal disease for humanity), they were running to their doctors and clinics before marriage and having an HIV test to make sure they were HIV negative before taking an intimate relationship to the next level. Now days many of us who are smart will have already been upfront with our kids and told them about their origins – and we will also be as inquisitive about who are children are dating, and you can be rest assured if my son’s girlfriend mentions that she’s a product of egg donation then a pretty straight forward DNA test will be done to rule out any sort of “consanguinity”.

But don’t you think life would be so much easier for the entire “industry” if there was an egg donor registry that housed information about our egg donors? And clearly not for the sake of seeking them out or hunting them down, or sending “our” children to their door steps to say “Oh hi, remember 18 years ago when you were an egg donor and you helped my parents…” But for things like health issues that can crop up from both sides. If an egg donor develops a medical issue in her life, that information can be added to a registry, and the registry can contact recipient parents. Or if a child created by an egg donor develops a medical issue, that information can be added to a registry and that information can be shared with any of the half siblings this egg donor may have helped create. And it can be done so anonymously. And last but not least, there is something to be said to have a way to track how many egg donor cycles an egg donor truly undergoes. The idea that I might be recipient number 12 and could possibly contribute to an egg donors health issues 20 years down the road makes my hair stand on end, let alone how many children could possibly be born through one specific egg donor is concerning.

I am not sure of the answer – I just know we have a problem and it needs to be addressed. My only concern is that the powers that be are going to drag their feet like the government does when testing drugs that save lives. It’s going to be like getting Elephants to mate, it’s done at high levels, It’s accomplished with A great deal of roaring and scream. And it takes years to produce and results.





Portland, OR

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November 2009
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