The Study I'm Afraid to do
I'm planning on being a psychologist when I'm older. And not only will I counsel people, I will do studies as well, because I want to understand neurological diversity better.
But there's one study I want to do, out of my own interest, but I'm afraid to do it because of how people will use what I learn from it. I won't even describe the study except to people I trust, for fear someone else will use my idea for exactly the purpose I fear.
That's because this study would help identify autism genes, and not only that, it would help predict an autistic person's traits based on their genes. I want to know the genetics of autism because it interests me, the same reason I'd like to know the genetics of giftedness, the same reason I read up on the genetics of various developmental disabilities like Williams Syndrome. They interest me.
But I know that's not why other people want to know the genetics of autism. Other people want autism prevention. They want to be able to test a fetus or embryo to know if xe will grow up like me, so that they can prevent the birth of autistics. Just like they prevent the birth of Down Syndrome kids and other chromosomally different kids.
I know scientists aren't supposed to worry about how their results will be used, but in my opinion that's irresponsible. That attitude causes a lot of harm. And many scientists do think about how their results will be used. They think things like "if we identify the genes for autism, we can provide genetic counseling and prenatal screening for parents of autistics." Scientists regularly think these things.
I'm fighting for the rights of disabled people, and I hope someday no one will want to prevent the birth of people like me, or of people with Down Syndrome or any other condition. If I live to see that, maybe then I'll do my study. But for now I won't do it.
Ettina
But there's one study I want to do, out of my own interest, but I'm afraid to do it because of how people will use what I learn from it. I won't even describe the study except to people I trust, for fear someone else will use my idea for exactly the purpose I fear.
That's because this study would help identify autism genes, and not only that, it would help predict an autistic person's traits based on their genes. I want to know the genetics of autism because it interests me, the same reason I'd like to know the genetics of giftedness, the same reason I read up on the genetics of various developmental disabilities like Williams Syndrome. They interest me.
But I know that's not why other people want to know the genetics of autism. Other people want autism prevention. They want to be able to test a fetus or embryo to know if xe will grow up like me, so that they can prevent the birth of autistics. Just like they prevent the birth of Down Syndrome kids and other chromosomally different kids.
I know scientists aren't supposed to worry about how their results will be used, but in my opinion that's irresponsible. That attitude causes a lot of harm. And many scientists do think about how their results will be used. They think things like "if we identify the genes for autism, we can provide genetic counseling and prenatal screening for parents of autistics." Scientists regularly think these things.
I'm fighting for the rights of disabled people, and I hope someday no one will want to prevent the birth of people like me, or of people with Down Syndrome or any other condition. If I live to see that, maybe then I'll do my study. But for now I won't do it.
Ettina
posted by Ettina at 8:19 AM
1 Comments:
Here is what I wrote on AFF, without having read your blog, I was having a similar idea:
Posted: Wed Jul 05, 2006 1:15 am Post subject:
"curiosity - research - why"
"I have noticed most Autistics to be curious about something, or even about everything.
"I have noticed many Autistics to want to know WHY? about something and won't stop until we find out that reason.
"Many are curious about science.
"Many are curious also about what/who we are and how we became that way. Just to know.
"Yet we have to work against the funding of research into the genetic causes of Autism, because this research will very probably be used to abort children who could turn out autistic.
"It seems really sad to me that this is the case.
"I am not personally a scientific person, but nonetheless it seems to me that we of all people ought to be able to support scientific curiosity... without fearing for our own life-quality or for the lives of other people."
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