11:25am August 29, 2014

“
Now we enter the age of genetics, which offers such hope for advancing healthcare but has also sparked a new form of eugenics, with scientists talking of eradicating disabilities at birth from the human condition.

…Those preaching this new eugenics conflate health and disability, harm and difference. They dismiss how diversity enriches the world, reject complex issues of choice, ignore implications of inferiority. They sweep aside Stephen Hawking writing about how motor neurone disease focused his work, or studies showing people with Down’s syndrome to be far happier with their lives and looks than the average person.
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Will my disabled daughter have a place in this genetic wonderland? (via disabilityhistory)

Yeah, it worries me that people will not have a choice in how their genetics are tinkered with. Their parents will make the decision for them. And considering that disabilities fundamentally affect how you perceive, move, think, feel, and behave, that means parents can dictate who you are at a very basic level.

Look at the range of opinions you see in people today living with a disability. Some people absolutely hate it, see it as nothing but a disadvantage, perceive no benefit from it, and would like to have their disability eliminated. Others like it, see it as having positive characteristics and no *intrinsic* negative consequences (although it might have negative effects because of how people perceive them). Other people, like myself, are in the middle. They sometimes like it and sometimes hate it, and believe there are both costs and benefits to their disability, regardless of how it is viewed. They probably don’t want their disability to be eliminated entirely. However, their opinions on smaller genetic variations might differ. They might be interested in genetic alterations that could make the downsides easier to deal with or help take advantage of the upsides. Or they might not want to tamper with their genes in this way at all, especially given that present-day genetic engineering is still a blunt instrument, and the links between genetics, brain, and behavior are still not well understood.

It would be unthinkable to force a “cure” on the adults who see their disability as intrinsically positive, or to deny one to those who view it as completely negative. And for parents to make the choice before their child has a chance to even form a viewpoint on the matter is equivalent to forcing it on an adult.

TL;DR, I think it would be pretty cool if scientists developed ways to tinker with the genome to ameliorate disabilities, so long as people were free to choose whether or not to use this technology as adults, and did not have it forced on them as children (or by an institution, if they’re institutionalized in adults). If this is a before-or-at-birth sort of cure, or if institutions are going to be forcing it on people, then I oppose it.