![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
The Family Curse
May. 10th, 2006 09:10 amSo, the big news today is the debate on elective pre-implantation genetic screening (PGD). The usual range of diseases pop up, and the usual arguments. Here's what I think:
First, our particular case - HD - is one of the grey area ones. You can (and I am) live a full and happy life with the HD gene, and the meds are getting pretty good once it starts to bite, and if my Dad's anything to go by then you don't even have to die particularly early. HD can take a ticket next to the Number 9 bus in the "things to kill me" queue. It's not like, say, CF which has a high early mortality rate.
Second, identifying people by their conditions. This is one the disability lobby has legitimate but to me slightly wonky concerns over. You are not Jack's misfiring synapses.
Third, and really my point, is the Family Curse. Sounds medieval, doesn't it? Well, that's how it feels: "Your father's line go mad," say the priests, raising the childhood spectre of Uncle Billy. And I imagine the corollary is just as bad: "Your mother and her mother grew tumours and had great chunks of themselves sawn off."
Living with it is actually pretty easy. Deciding whether or not to continue it is incredibly hard.
When I was last in the babymaking business, the option of IVF/PGD wasn't there. It was get pregnant, get tested, and choose whether or not to abort. No number of theoretical discussions make it easier and in the end it was one of the tensions that ended my marriage. Frankly, the stress of it meant I couldn't get it up. Not while looking over my shoulder for the Family Curse. There was nothing wrong - except that damn set of odds.
Would IVF/PGD have made that easier? It would have abstracted it, so maybe.
Would I elect to have non-HD children? Yes, absolutely, no question about it. The "if my parents had done that, I wouldn't be here" argument is logically void. I do not think that anyone with an inherited condition is any less of a person as a result of that. But I do think that parents who knew, and could do something about it, and chose not to - I think that's irresponsible and selfish.
Is this eugenics? Yes, on a personal scale. It's husbandry - pruning the family tree to encourage strong shoots, and doing it in January before there's anything to prune away.
Should it be available? For conditions which meet this "family curse" criterion, hell yes. Someone with an inherited 60% chance of breast cancer (the BECA1 gene) has exactly the same kind of curse I do - the manageable threat of personal bogosity, and the very difficult issue of what to do when you choose to breed.
It's not an easy decision. If accepted widely, then it becomes the de facto thing to do and then there *is* pressure and you end up with a pre-implantation eugenic culture. Frankly I don't think that's such a bad thing. You'd have to watch out for insurance companies, though - they'd use this, like everything, as a way to deny treatment. Thank Bevin for the NHS.
As for me, I've taken myself out of the gene pool. By now, any kids I had would be in their teens about when HD is expected to strike, and even ignoring the transmission issues, I think that's irresponsible. Personal decision, personal eugenics if you like.
First, our particular case - HD - is one of the grey area ones. You can (and I am) live a full and happy life with the HD gene, and the meds are getting pretty good once it starts to bite, and if my Dad's anything to go by then you don't even have to die particularly early. HD can take a ticket next to the Number 9 bus in the "things to kill me" queue. It's not like, say, CF which has a high early mortality rate.
Second, identifying people by their conditions. This is one the disability lobby has legitimate but to me slightly wonky concerns over. You are not Jack's misfiring synapses.
Third, and really my point, is the Family Curse. Sounds medieval, doesn't it? Well, that's how it feels: "Your father's line go mad," say the priests, raising the childhood spectre of Uncle Billy. And I imagine the corollary is just as bad: "Your mother and her mother grew tumours and had great chunks of themselves sawn off."
Living with it is actually pretty easy. Deciding whether or not to continue it is incredibly hard.
When I was last in the babymaking business, the option of IVF/PGD wasn't there. It was get pregnant, get tested, and choose whether or not to abort. No number of theoretical discussions make it easier and in the end it was one of the tensions that ended my marriage. Frankly, the stress of it meant I couldn't get it up. Not while looking over my shoulder for the Family Curse. There was nothing wrong - except that damn set of odds.
Would IVF/PGD have made that easier? It would have abstracted it, so maybe.
Would I elect to have non-HD children? Yes, absolutely, no question about it. The "if my parents had done that, I wouldn't be here" argument is logically void. I do not think that anyone with an inherited condition is any less of a person as a result of that. But I do think that parents who knew, and could do something about it, and chose not to - I think that's irresponsible and selfish.
Is this eugenics? Yes, on a personal scale. It's husbandry - pruning the family tree to encourage strong shoots, and doing it in January before there's anything to prune away.
Should it be available? For conditions which meet this "family curse" criterion, hell yes. Someone with an inherited 60% chance of breast cancer (the BECA1 gene) has exactly the same kind of curse I do - the manageable threat of personal bogosity, and the very difficult issue of what to do when you choose to breed.
It's not an easy decision. If accepted widely, then it becomes the de facto thing to do and then there *is* pressure and you end up with a pre-implantation eugenic culture. Frankly I don't think that's such a bad thing. You'd have to watch out for insurance companies, though - they'd use this, like everything, as a way to deny treatment. Thank Bevin for the NHS.
As for me, I've taken myself out of the gene pool. By now, any kids I had would be in their teens about when HD is expected to strike, and even ignoring the transmission issues, I think that's irresponsible. Personal decision, personal eugenics if you like.
