Saturday, March 19, 2011

Other family history stuff

In response to my previous post about genealogy, Lut very sensibly pointed out that there's a lot more to the connection to one's genetic progenitors than genealogy. Well, yeah. Good point. I think that when I started the post, I meant to get to that, but I never quite made it there. (Of course it's also possible that I wasn't thinking clearly--I can't actually remember what I was thinking, so this actually seems more likely.) Wanting to know whether you're more closely related to Charlemagne or Genghis Khan (for the record, my money is usually on Genghis) is hardly the most serious issue that a donor-conceived child is likely to face when trying to figure out what their conception means for their identity.

I imagine that many donor-conceived people are much more interested in knowing where they got their eyes/hair/funny big toe/love for anchovies/odd sense of humor, if they have other half-siblings that they don't know about, and if there are any dark medical secrets hidden in the missing half (or halves) of their family tree. Not having this information might be painful, but then again, many people who aren't donor-conceived also don't know these things.

Half-siblings? Any of us could have them. Many closed adoptions probably involve family secrets, so children born in the birth families later may have no idea that they have half-siblings, and of course there's always the fact that none of us know for an absolute fact that our genetic father never sowed any wild oats elsewhere. Obviously the odds of having unknown half-siblings are higher for adopted or donor-conceived people, but they aren't zero for any of us.

As for family medical histories, I think that they sound great on paper, and they have their real advantages, but can be overrated in real life. For example, I admit that it's nice to know that my parents have had three cancers between them-- no, scratch that, it's horrible to know that my parents have had three cancers between them, but given that they have, it's nice to know what they were so I can be on alert. However, there have been all kinds of things that they didn't tell me. I have no idea what two out of four of my grandparents died of, for example, although both died of disease, one of which was long-term and degenerative. So whenever I check that there is no family history of disease X, all that I really mean is that I don't know of anything, not that there's nothing there. When at age 37 I told my mother that I had been diagnosed with endometriosis, one of the first things that came out of her mouth was that her doctors had always thought that she had endometriosis as well. Uh, mom, don't you think that it would have been more helpful to share that information with me before I was approaching the END of my fertile years? It might have changed everything to know about the endo before I was well over 2 years into trying to get pregnant, but she never bothered to mention it. In this case, having false info (the belief that I did NOT have a family history of endometriosis) was undoubtedly worse than simply having no information, since endo is highly heritable, so I thought I probably didn't have it. In fact, knowing that my fertility was under direct threat might have changed any number of decisions from my early 20's on. So, that whole family medical history thing? Not so helpful to date. Obviously my results may not be typical, but based on how non-attentive (translation-non-obsessive) most people seem to be about medical issues, I think that they probably are. So, people without family medical information might imagine that they're missing more than they really are. The reminder of one's origins every time one goes to the doctor's office might actually be the main problem here. Don't misunderstand. I'm not saying that donor-conceived people and adopted people don't have a right to feel upset about not having this info if that's how they feel, I'm just saying that if they are upset, they might be overestimating the actual value of that information for most people that have it (or think they do).

I wonder if the issue of resemblance is really at the heart of people's discomfort with donor-conception. Given how much people enjoy talking about family resemblances, there is obviously something really human about wanting to know where your features came from. This is what I worry about most if we use donor eggs. Eggbert looks almost exactly like Mystery, so I can always hope that we'll get lucky that way again. Given the way that genes tend to shake out in biracial children, I'm cautiously optimistic that regardless of who the child actually resembles, strangers will just look and see "white parent--check!; Mysterious parent--check!" and conclude that the child does actually look like me, even if he or she doesn't. I've noticed that in the USA, people seem to always think that biracial kids more closely resemble the darker-skinned parent. Books could be written about THAT and what it means about the state of race in America, but regardless, that might create enough cover for the child to not have to talk about his or her origins unless he or she actually wanted to. Friends and family members will know the truth, so hopefully they will resist the urge to indulge in much in the way of resemblance talk.

I think that by all of this, I'm really trying to wrestle with a) whether I really think it's OK to deliberately conceive a child who won't have much of a relationship with the source of half of his or her DNA (I do, but just need to reaffirm it to myself from time to time), and more importantly b) how far am I willing to go, and at what cost, to protect the child's right to information to the extent possible. Ideally, I think a known donor (a friend, family member, or compassionate acquaintance) would be best for the child. However, all of my close friends and cousins that I am close with are at least 35, and therefore not good candidates to donate, my sister is older than me (yet she has a one-year-old--is that fair?), and I live in a small town where looking around for a donor would not be easy, and would jeopardize the child's (and our family's) right to privacy. The closest RE is a few hours away in a bigger city, so we could look there if we knew how, but at this moment, I don't (any tips about how I might do that would be VERY much appreciated). When I look at RE info, it seems that most of the donors they recruit are anonymous, which doesn't really help. We had originally thought about going overseas for DE-IVF, since the costs are substantially lower, but it seems that most such programs insist on anonymity.

Sigh. It's all so complicated.


Antropóloga said...

I guess there wouldn't be any related phenotypic expression, but even with a donor egg you would still be contributing your mitochondrial DNA, so it's not like what makes you you would be completely excluded.

I had the impression that some donor egg places give you lots of info about the donors? You could even advertise for someone with your own particular background?

For the medical side of it, I agree it isn't probably as big a deal what the history of genetic relatives are. I mean, for the most part, what are you going to do about that info? And if you really want to explore the genotype, there are services now that will examine DNA to see what risk factors there are.

Lut C. said...

I have been thinking some more about your previous post.

If I were to have a non-bio child (short for donor-conceived/adopted) with a passion for genealogy I would feel responsible I suppose for the hurt this child might feel at the door being closed. A passion for genealogy is just one example, a burning desire to know things about the bio parents another.

I guess the question is would I feel I had wronged the child by choosing for donor conception or adoption. With adoption one can assume that the child would have been put up for adoption regardless of my decision to adopt. The issue is different with donor-conception, which doesn't happen if I don't decide to go ahead.

Though I said before that no one chooses that circumstances of their conception, that doesn't mean that anything goes. But it's something everyone has in common.

That said, my feeling is that donor conception is not wrong as such.

Which circumstances are ideal are another discussion.

Sue said...

I found all the scrutiny of family medical history a little odd when I went down the donor path. Not that it doesn't matter, but I realized how very little I know about my own family.

I found my own donor through advertising because my clinic in NC only used anonymous donors. We don't have a relationship with our donor, but we know who she is, we've met, and we asked that she be willing to have contact with any donor offspring down the road if they wanted to know more about their origins.

Oddly, after becoming pregnant I found out that my sister in law had been an anonymous egg donor at the clinic I used. I was surprised she passed their family health history screening because my donor would NOT have been accepted into their program as an anonymous donor. My donors' family flaws seemed OK to me, but my SIL's family medical flaws not so much - and to explain, my husband is adopted and not genetically related to his sister, who is the biological child of his parents (and we know nothing about my husband's biological family or their health history). There seems to be a push to build a perfect baby when you use donor gametes and I just had to accept that wasn't possible.

A Shadow of My Former Self said...

Thank you for stopping by my blog. I agree, all of this brings about complicated issues which touch a very sensitive part of sense of self and where one comes from and where one belongs. In light of all the medical advances that have taken place in the last 25 years, I look forward to seeing how things will be 20 years from now. Which issues will be put to rest and what new issues will pop up that we haven't yet considered?

Marie-Baguette said...

please don't go the "if I had known about my endo history, I would have had children earlier" route. You don't know what you would have done, but I bet you would not have done anything differently. First of all, most of us were not ready to have children (and/or did not meet our lifepartner) before our 30s. Secondly, there are plenty of people who have endo when no one else in their families does. Endo is often missed by doctors (Glamour US did a great article on this . It took 15 years for my docs to diagnose my PCOS even though I had very irregular periods). So please, don't hate your mum for not sharing her "maybe I had endo" story. I know it is hard not to try and find a guilty party for our infertility but it is best to let it go... or invest our anger into something positive like fighting for endo to be known and diagnosed and cured. By the same token, vent away your anger and frustration! Having children does not make infertility less painful