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"The Problem With an Almost-Perfect Genetic World"


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http://www.nytimes.com/2005/11/20/weekinre...5cbcaaa&ei=5070

excerpt: "We're trying to make a place for ourselves in society at a time when science is trying to remove at least some of us," said Andrew Imparato, president of the American Association of People With Disabilities, who suffers from bipolar disorder. "For me, it's very scary."

aside: that's cool that the president is bipolar

...wait, or is it?

would anyone here choose to be MI?

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Can't access the article, but: I would never choose to be MI.  But I wouldn't want to have been aborted, either. 

The eugenics issue is a very sticky one.  There are children so severely disabled that I personally would not be able to handle caring for one, and I would want to have the decision to abort such a child.  On the other end of the spectrum, we don't want to breed all the interestingness out of the population.  Bipolar disorder is linked with creativity, and the relatives of schizophrenics are more likely to be extremely musically gifted and creative.  This doesn't mean that all forms of bipolar disorder and schizophrenia are worth keeping. 

For most things, especially uncommon things, the world won't notice if they pass.  The people in the last generation will suffer for it because they won't have other people around with the same problem and they'll know they aren't wanted, and that's going to suck for them, a lot. 

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Eugenics has always come down to two things for me. Where would it ever stop? I've heard some tongue in cheek arguments for ridding the world of stupid people and the like. So okay.. let's say we do that. Only smart people left. But now, all of a sudden, the people who *were* average, are *now* stupid compared to the rest of the population. Uh-oh.. what do we do with them?

The other thing that bothers me about it, is that so often the argument for eugenics is based on a model of economic value. "They can't contribute to society" becomes a reason to eliminate people. What about the other things the person is? What about the compassion they evoke in others around them? What about the unique insights they may have? What about the joy they bring to those who love them? Aren't those worth anything?

Would I choose to have my bipolar disorder? I don't know. It's not an option I was given. It just is.

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Heya,

Eugenics scares the hell out of me.

In all its uses and guises.

Generally the people advocating/carrying it out mean well.

We all know which road is paved with good intentions.

Getting off the eugenics soapbox before I even get on it, bacause you don't need to hear all that today.

(See?  I'm gaining insight and doing a better job knowing when not to lecture.)

Would I, personally, choose to be bipolar again?  Not a freaking chance.

Would I choose to not exist instead?  Most days, also not a freaking chance.

Except on the scary mixed days when that sounds like a pretty good option.

Would I want to test my kids for BP?

OK here's a soapbox I can't step off of.

You know what??  I know one family who, after several pregnancy losses, had amnio done on the next pregnancy.  Turned out the kid has Down syndrome. 

Knowing this was coming, mom and dad had more time to get ready -- arranged to deliver at a hospital with top pediatricians, arranged alternate working arrangements, educated themselves about the needs of their child, before she even got there.

I was just a kid at the time.  That was the first time I realized prenatal diagnosis could be used for that, instead of always as a tool for deciding on termination.

Not sure prenatal diagnosis would be worth bothering about in MI, though, because babies are usually okay for a while.  Newborn diagnosis would be just as good, and help families to plan/learn/cope.

In terms of reproductive rights -- well, I know one young borderline who took the advice of her psychiatrist and her gyne to have her tubes tied -- yes, permanent sterilization -- when she was 18 years old.  Because she was borderline.  Issues of consent aside, where do they get off?  She's now mid-twenties, stable, and good God why couldn't they just have given her a freaking IUD so she would have a choice later?  Where does it stop?

I would *not* opt to have not existed.  But I *would* opt for my parents and doc to have known something was coming, so I could have *lived* my life so far instead of starting from here.

Would I opt for someone having given me genetic therapy to stop the BP in its tracks?

Without a doubt.

Off the soapbox, now.  ;)

--ncc--

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One thing in that article bothered me (well, the whole topic is troublesome, but this stuck in my head)....

The subject of loneliness. Nobody likes to be lonely, but would you really wish a life long condition on someone just so you wouldn't have to be alone???

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The subject of loneliness. Nobody likes to be lonely...

<{POST_SNAPBACK}>

It was a poorly written sentence in the article, but I took it to mean that the parents and people of disability would be shunned by society for not being tested (and an assumption then to not having an abortion).

Who knows, maybe gene therapy will patch things up before an abortion has to happen.  That would be nice.

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I'm not going to even tread into the sticky wicket of eugenics. And maybe this is not the place for this...but I wonder how many of us decided not to have children, based on our MI? I did. There's MI running way back on both sides of my family, far and deep. I've had to struggle so much, and see my mother struggle. Eventually, I decided I just didn't want to pass this on. That was my primary reason. There were some other factors (such as another genetic disorder, Epidermolysis Bullosa Simplex). But the MI was the critical factor in my thinking.

I throw this in to the discussion for whatever it's worth.

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I'm not going to even tread into the sticky wicket of eugenics. And maybe this is not the place for this...but I wonder how many of us decided not to have children, based on our MI? I did. There's MI running way back on both sides of my family, far and deep. I've had to struggle so much, and see my mother struggle. Eventually, I decided I just didn't want to pass this on. That was my primary reason. There were some other factors (such as another genetic disorder, Epidermolysis Bullosa Simplex). But the MI was the critical factor in my thinking.

I throw this in to the discussion for whatever it's worth.

<{POST_SNAPBACK}>

*raises hand* I have decided not to have any more children because of my MI. The possibility of passing it on is only one factor in that though. I just don't think I would be able to handle more kids, and I think it would be irresponsible of me to have children I couldn't care for. My daughter was born before I was dx'd, and I don't know that I would've had her if I'd been dx'd sooner... Which isn't to say that she in any way makes my life bad. On the contrary, she is my absolute joy! I'd be lying, though if I didn't admit that I am consumed by guilt some days because I'm not able to be a better mom, and because I may have passed on some crappy genes.

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The only interest to me with this eugenics stuff the possibility of researchers finally having to locate these alledged genes responsible for mental illnesses. It's laughable to me that they could remove mental illness from the population with genetic engineering. It's like thinking they could use eugenics to remove jealousy from the population.

Anyway I prefer organic people. They're more nutritious.

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The only interest to me with this eugenics stuff the possibility of researchers finally having to locate these alledged genes responsible for mental illnesses. It's laughable to me that they could remove mental illness from the population with genetic engineering. It's like thinking they could use eugenics to remove jealousy from the population.

Anyway I prefer organic people. They're more nutritious.

<{POST_SNAPBACK}>

Well, medicine hits some MI rather like a silver bullet.  Maybe there are isolated gene loci to MI.  It follows in families tightly. I don't know.

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Heya,

(disclaimer -- I don't really disagree with anyone here.  When I wrote this it sounded fairly confrontational but really I'm just saying what works for me.  No soapboxes today.)

Well, if they can use gene therapy to counteract my inheritance of high cholesterol, they can use it to counteract my inheritance of fucking bipolar.

High cholesterol will wreck my heart.  Bipolar will wreck my brain.

I can take medication to *control* both. 

Therapy is a form of medication for my brain, which is useful because of the specific functions of my brain.

An organ is an organ.

Someday gene therapy -- or proteome therapy, the next generation -- will help.

This is of course based on nothing except what I know is true for me.

Makes me feel better, turns on the right synapses in my brain.

Others feel differently.  Others interpret the whole mind-body thing differently.

And that's fine, and valid, whatever works for you.

--ncc--

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