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Genetic Labels and Consequences

Scientists are seeking what makes people different, at least genetically. What is done with this information is the realm of ethics and morality, not genetics.

I'm autistic or a person with autism or whatever. I don't care what the label is. I was what I am before the label even existed and I'll be me long after some silly group of people change the labels and criteria again. What will not change (in theory) is my genetic composition.

That fact of whatever genetic variation exists in my cells does not change regardless of the label and even regardless of a geneticist discovering it or not. "Autism(s)" predate genetics just as all human conditions predate their modern-language labels and cultural reactions.

I am curious to know what make me who I am. What I do not want are choices made that assume my traits somehow reduce the value of my life. That's a cultural matter. We must change perceptions of "autism" within the culture; only then will the genetic issues not be quickly associated with concerns of eugenics.

If I were a geneticist (far more interesting to me than what I did study), I would be too focused on the data to ponder the misuse of information as it becomes cultural knowledge. I love data. I always want more data and more facts.

Yes, science needs ethics, but these geneticists are creating maps that could in fact help a lot of people someday. There are some horrible (fatal) genetic conditions. I can understand wanting to map those. Along the way, the reality is that most human traits will be mapped in some way.

Will information on genetics be misused? Probably. Which is why I hope we discuss the implications constantly and never forget the potential we already see in Down Syndrome screening. The 92 percent termination rate troubles me.

If we had tests for autism tomorrow, it would be up to parents how to use such data. I'm not comfortable telling someone she must have a child she would reject. I'm also not comfortable with selective abortion. I don't have any easy answers -- and neither do the geneticists.

From today's New York Times, we are also reminded that locating genes has not produced many cures or treatments. In other words, locating an anomaly is about as far as we have come in the last decade.


  1. Worth considering: Dr. Judy Badner's
    position statement on genetic discoveries in autism.
    An oldie but goodie: dates from the late 1990s, but still quite relevant.


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