RSS
Vox has a piece on genetic testing and what it may unravel. One portion is cautionary:
That’s when she discovered Schwartzman. And her life changed. Afraid to ask her mother about him, she went instead to her mother’s best friend for answers. The friend confirmed that Schwartzman was probably the son Pearl’s mom had given up years ago.
“You can’t know what you’re going to find. It isn’t all good stuff. It’s not all happy stuff. And maybe some secrets are better left secrets.”
At first, it was “fantasy land,” Pearl said. “I found a brother. On his part, he found his biological family.” She was happy for Schwartzman, for his relief. “I felt an immediate kinship and connection with him,” she said. “We look similar. We have similar movements.”
Now, three years after the reunion, her opinion about the experience has changed.
“I suddenly had to rewrite my own family history, which is a shock,” Pearl said. “It did not make sense in terms of all the stories I had grown up with, in terms of what my life was. It did not include [my mother] getting pregnant, having a kid, giving it up for adoption.”
…
“This was my mother’s secret,” she said.
“My mother used to say, ‘Be careful what you wish for.’ [With 23andMe,] you can’t know what you’re going to find. It isn’t all good stuff. It’s not all happy stuff. And maybe some secrets are better left secrets.”
My attitude about these issues about parental privacy in relation to adopted children is that the children weren’t asked to be born, they didn’t give consent. You give up a lot of rights when you make some decisions as an adult. Sometimes those rights you give up are precious. Sometimes it isn’t fair (consider a situation where a person who opposes abortion is raped, and so carries the baby to term). I agree that these are complex issues, and they need to aired out. But my moral stance is to first and foremost to look at the world through the eyes of future generations, who didn’t ask to be born into this world, and ask what would they want? Think about the children! It’s cliche, but it has a lot of truth to it. Some adopted children don’t want to know about their past. From what I have seen most do want to know more than they do, at least to an extent. Being a kid is hard enough.
More broadly, light is good. I’m not a Whig about progress, but both the norms and arc of Western history so far have been toward greater openness and candor. David Brin is a great science fiction author, but 50 years from now I suspect he’ll be remembered for writing The Transparent Society. It was interesting when it came out. Today it is incredibly relevant.
English
Arabic
Chinese (Simplified)
Dutch
French
German
Hebrew
Hindi
Italian
Japanese
Korean
Persian
Polish
Portuguese
Russian
Spanish
Swedish
Turkish
Vietnamese
One thing of note is that the “show close relatives” is no longer optional. It used to be, if you had enabled the DNA Relatives feature, you could choose whether or not to show close relatives. Now, there’s no choice and they defaulted to showing close relatives on people who had opted out of that feature.
I think that 23andMe is run by a bunch of morons.
They need to come up with a way so that adopted children can get access to their family medical history even if their biological parent(s) don’t want to have a relationship or contact with them. Seems like the best time would be when people give up children for adoption, but of course that’s also an emotionally fraught time for many such people.
I suppose it’s better than this happening:
http://www.dailymail.co.uk/news/article-2718216/Woman-tracks-mother-abandoned-baby-realises-unwittingly-married-BROTHER.html
I’ve been in a lot of hot water for unraveling the genetic families of families the same way CeCe Moore does in the Vox piece, but to save people’s lives rather than to satisfy their genealogical curiosity. We are an approved clinical testing lab, unlike 23andMe, and we consent patients very carefully. We explain that we will use their personal and family data to improve their clinical outcomes. Yet when the promised improvement hinges on reconstructing family trees (for linkage analysis), then people get really queasy.
The clinical testing is subject to HIPAA privacy rules, which at the face of it prohibit sharing any info about family members with a patient who hasn’t already volunteered it. The specifics are murky; quite possibly, a lab can report, in general or statistical terms, that “a particular genetic marker tracks with the disease in the patient’s extended family”, but there is fear that the identity of some of the other tested relatives might be deduced even from such a generic info, and that it will then be construed as a privacy violation.
So we ended up not telling patients anything about what has been genetically linked with health conditions in their families. In one extreme case, a family of German extraction from Missouri had numerous tested relatives with breast and ovarian cancer, but also two younger, presently healthy relatives who are 1st cousins, and who weren’t aware of the testing outcomes in the rest of the family. One young lady is negative for the risk allele, but her mother and sister had cancer, so she has to be counseled as high-risk patient. Another young lady is positive for the familial risk allele, but the cancer is on her father’s side, and she doesn’t have any first degree relatives with the disease. So she has to be counseled as a low-risk patient, and we can’t drop any hints that she may need to talk with the more distant relatives on her dad’s side to look for answers…
There are lots of stories of heartbreak, of relatives dying young and familial connections scrambled and lost. One huge Catholic clan from Massachusetts had early-onset colon cancer linked with a putative risk allele. In one branch, a grandfather died young of cancer, and his widow remarried their boarder. The oldest daughter from the first marriage ran away and had an out-of-wedlock child before coming down with cancer and returning to the family to die. Her toddler (our patient’s future mother) was then adopted by the granny; some children kept biological father’s name, some took the adoptive father’s name, and many died young. The tested patient literally had no clue who was an aunt, a grand aunt, a step aunt – just that that her deceased mother had several relatives who were all “aunts” to a growing child, and it’s now too late to ask to sort it out. But with a good genealogy effort, it wasn’t really late. The unknown family tree has been rebuilt from scratch, and turned up a huge half-sibship of the patient’s genetically tested third cousins, and a very strong linkage. Alas, we aren’t allowed to communicate any of this back. “If patients don’t know what we know about the relations in their families, then it’s too bad for them”.
Quite a few adopted children, naturally, too, who can’t be told anything.
Razib,
Any thoughts on this with respect to gamete donors? There’s been an ongoing legal battle here in Canada. As someone conceived this way to begin with, it bothers me to no end that my government thinks its perfectly acceptable for a doctor to give false information about a donor and then shred the records after six years. I’m sympathetic to the argument that the donors donated under a promise of anonymity, but if both donor and child both consent to lift that, should we not be able to seek each other out? Or half-siblings for that matter? Or what if I have a genetic predisposition to a given illness? Frustrating to no end. Inexcusable.
Here’s the ruling that strips me of my right to know who I am.
http://www.canlii.org/en/bc/bcca/doc/2012/2012bcca480/2012bcca480.html
Tasmanian Aboriginal people are fairly famous for having been driven into extinction within recent history.
So it might come as a bit of a surprise that, not only have rather nasty ‘family wars’ between claimed descendants been going on for a long time, they are becoming worse with time. You would think they would avail themselves of modern science to settle the disputes, but that is the last thing they want to do. It is even more disturbing when one of the warring factions is a federal politician, who you might hope would set an example of rational and ethical adult behaviour. If she really cares about indigenous people, she might be doing them some real good, but there is no way she is going to risk blowing away the smoke screen.
Part of the problem, of course, is that the Aboriginal ancestry of all concerned is vanishingly small, and claiming to be Tasmanian Aboriginal on the strength of it is farcical, and in reality they all know it.
http://www.abc.net.au/news/2014-09-08/anger-over-jacqui-lambies-aboriginal-claims/5728622
http://www.abc.net.au/news/2014-09-10/lambie-says-she-has-been-threatened-over-aboriginality-claim/5733652
Any thoughts on this with respect to gamete donors?
i agree with you. i don’t think contracts are binding on the unborn/pre-born. their right to know trumps the right to privacy of the donor. it’s a morally/ethically difficult situation though, and i can see the other perspective. but these are human beings (the to-be-children).
I read the Vox article, and I was not impressed. There seems to be an unstated assumption that people need to be allowed to preserve their fantasies, self-delusions, and lies.
I say pants to that. Life is tough. Wear a cup.
If you can’t deal with the truth, you have a problem. You need to grapple with your problem. The rest of us need to stop hearing you blubber.
Well, they’re all special little snowflakes, you see.
I’m sympathetic with your position, but the people who really bother me are the ones who think they have the right to decide what I am allowed to know about myself.