Skip to main content

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.

Comments

  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.

    ReplyDelete

Post a Comment

Comments violating the policies of this blog will not be approved for posting. Language and content should be appropriate for all readers and maintain a polite tone. Thank you.

Popular posts from this blog

Autism, Asperger's, and IQ

"Aren't people with Asperger's more likely to be geniuses? Isn't genius related to autism?"

A university student asked this in a course I am teaching. The class discussion was covering neurological differences, free will, and the nature versus nurture debate. The textbook for the course includes sidebars on the brain and behavior throughout chapters on ethics and morality. This student was asking a question reflecting media portrayals of autism spectrum disorders, social skills difficulties, and genius.

I did not address this question from a personal perspective in class, but I have when speaking to groups of parents, educators, and caregivers. Some of the reasons these questions arise, as mentioned above, are media portrayals and news coverage of autism. Examples include:
Television shows with gifted characters either identified with or assumed to have autistic traits: Alphas, Big Bang Theory, Bones, Rizzoli and Isles, Touch, and others. Some would include She…

Listen… and Help Others Hear

We lack diversity in the autism community.

Think about what you see, online and in the media. I see upper-middle class parents, able to afford iPads and tutors and official diagnoses. I see parents who have the resources to fight for IEPs and physical accommodations.

I see self-advocacy leadership that has been fortunate (and hard working, certainly) to attend universities, travel the nation (or even internationally), and have forums that reach thousands.

What I don't see? Most of our actual community. The real community that represents autism's downsides. The marginalized communities, ignored and excluded from our boards, our commissions, our business networks.

How did my lower-income parents, without college educations, give me a chance to be more? How did they fight the odds? They did, and now I am in a position of privilege. But I don't seem to be making much of a difference.

Demand that your charities seek out the broadest possible array of advisers and board members.…

Life Updates: The MFA Sprint

Life is okay, if more than a little hectic at the end of this first month.

With one month down, I'm 11 months away from my MFA in Film and Digital Technology. Though things might happen and things do go wrong, so far I'm on schedule and things are going well —— though I'm exhausted and working harder than I did for any other degree. Because the MFA requires projects every week, this isn't as easy to schedule as writing. Even researching a paper can be done from the comfort of home, at any hour.

You cannot make movies by yourself, at any time of day. It doesn't work that way. Filming takes time, and often requires a team of people. It's not comparable to working alone on a degree in writing or rhetoric.

The team-based nature of film is exhausting for me, but I enjoy the results. I also like the practical nature of the skills being taught. You either learn how to adjust ISO, f/Stop, shutter speed, and other variables or you don't. You can have theories …