A new topic seems to be making the rounds–well, not really all that new. (I wrote about it over a year ago.) But surely making the rounds. There is this from Slate and this on NPR tonight. Part of me just wants to sit back and have you go and compare and contrast. (That’s the teacher in me.) But just in case you are not inclined to do so, I will offer some thoughts.
Both stories are about the donor sibling registry. The registry allows people who used or were conceived with donor sperm to track down other people who used or were concived with the same donor. I’m not sure what exactly happened in the last couple of days that made both stories turn up–it seems to have been the publication of the article in Human Reproduction. (I’ll try to give that a read myself soon. Nothing like primary sources.)
Although starting with the same substance, the stories seem to be quite different. The Slate blog is somehwat sensational in tone and a bit sloppy. I do sort of get this, being a blogger myself. But it’s quite a leap to compare the sperm donors involved here to Ghengis Khan on the one hand and Nadya Suleman on the other. I actually think sperm donors who donate to reputable sperm banks are fairly responsible. The only people who will be using your sperm to create children have given it quite a bit of thought.
Now that said, the idea that 55 kids might have been created using the same donor is quite startling. There may well be a problem with too many people carrying common genes, I suppose. But the sibling registry might address that. And I wonder how big a problem it is.
The NPR story takes a different tack and, to my mind, is much more interesting. It seems to me that the reporter (Joseph Shapiro, no relation) is quite careful in his choice of words. And he’s less interested in the sensational numbers and more interested in why people consult the registry.
It’s interesting to me that the majority of those who do are single women or lesbian couples. Put differently, it sounds like the people who use donor sperm but do not consult the registry are disproportionately heterosexual couples. I can think of two complementary reasons for this pattern.
First, lesbian couples and single women are already out there on the fringes of the so-called normal family. They are figuring out new roles/names for roles already. While obviously not everyone wants to track down the donor, I suspect these non-conformists are less shy about doing so. The donor won’t take their place–even if you imagine him to be some sort of “donor dad”, neither the lesbian couples nor the single mothers are dads. So he’s not really in role competition.
By contrast, in a heterosexual family, the child has a father. Perhaps the donor and the father stand just a little too close together. I would imagine many heterosexual couples who use donor sperm are not “out” about that choice to all their friends. So even the process of explaining who the donor is opens doors that might have been firmly shut. (By contrast, it’s pretty clear when lesbians and single women have kids that there’s a donor of some sort out there somewhere.)
Shapiro also touches on the category questions–what do we call various people. Are the donor siblings sisters/brothers? Half sisters/half brothers? What’s the relationship between the moms who use the same donor? All very interesting questions and (to my mind) best explored free of heavily loaded language.
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I’d register on the site if I knew where my father donated sperm – and I know he donated often. Obviously not to find my father as I know right where he is, but to find the half siblings. While I find it marginally interested to meet people I never knew I was genetically related to, the main reason would be to share with them a health history that is not ideal.
My father should never have donated in the first place, although I can only suspect that he didn’t know that. His mother died from Lou Gehrigs disease and a number of extended family members on his mother’s side of the tree going back have suffered from dementia/LGs/parkinsons – all related to a specific type of disease the seems fairly hereditory. (I am, in fact, a gestational carrier and not a traditional surrogate mostly due to this fact.)
I would feel better knowing I could contact anyone created with his genetic material to warn them of this potential such that they could themselves be tested.
Either way, I suspect that this would speak to the dangers of having any one person have 50+ kids. At least for as long as there is a potential for anything donated to have a genetic disease that is not known nor declaired by the donator.
The Donor Sibling Registry uses the donor number and other identifying information about the donor, to connect half-siblings. Only after contact has been made, is a DNA test used to confirm the relationship. Two donor conceived people are now planning to address this shortcoming. They are planning a DNA database open to all and free of charge, which will solely use the DNA profiles of the participants to connect half-siblings.
It is worth mentioning, that for cancer patients who need a bone marrow transplant, such reunions may be a matter of life and death.
Addendum. It has already happened that a US court of law has held that an anonymous sperm donor has only a limited right to privacy. This has happened when the judge decided that the interest of his offspring in being informed about his medical history, outweighed the donors right to “privacy” (in my own opinion there is nothing private about creating a child).
This is bound to happen more often in the future, but it is going to be a slow process. In the meantime it is reassuring to see that the first adult generation of donor offspring is now taking matters into their own hands.