Tuesday, January 27, 2015

Down Syndrome is "Hell on Earth."

Austen Heinz is the typical silicon valley disruptor superstar. Edgy. Controversial. Disruptive.

He was profiled for his DNA Startup which allows you to "create life."
In Austen Heinz’s vision of the future, customers tinker with the genetic codes of plants and animals and even design new creatures on a computer. Then his startup, Cambrian Genomics, prints that DNA quickly, accurately and cheaply.
“Anyone in the world that has a few dollars can make a creature, and that changes the game,” Heinz said. “And that creates a whole new world.”
The 31-year-old CEO has a deadpan demeanor that can be hard to read, but he is not kidding. In a makeshift laboratory in San Francisco, his synthetic biology company uses lasers to create custom DNA for major pharmaceutical companies. Its mission, to “democratize creation” with minimal to no regulation, frightens bioethicists as deeply as it thrills Silicon Valley venture capitalists.
Thrills capitalists! Fights bioethicists! Sounds like a amoral Silicon Valley winner to me.

Here's the hate speech [my emphasis]:
Heinz and other scientists have years of technical hurdles to clear before they can create living, breathing humans from a plate of printed DNA. Such an act is not possible right now. But he doesn’t hide his enthusiasm about the possibility.
Is he essentially enabling eugenics? He rejects that term, which to him means government interference with reproductive rights. He insists that it differs from his approach, which he describes as allowing individuals to eliminate future suffering in a more humane way than abortion, “which is pretty barbaric.” “A decent percentage of people have really nasty mutations that cause really bad, horrible things,” like Down syndrome and cystic fibrosis, he said. “These are basically like hell on Earth, and I think it’s smart to be able to avoid those things.”
1. Eugenic principles/ideologies are not state sponsored eugenic programs, but it's still eugenic principles and ideologies. I write about this a lot (most recently here). [UPDATE: Here's a useful article on who Heinz is as a provocateur]

2. What really bothers me about the "hell on Earth" line is not just that he said it, but that it was
I deal with being angry by
using silly pictures.
presented here as a simple acceptable opinion.

Would a racist talking about how blacks are inferior be simply permitted to make their statement without rebuttal or some kind of comment from the journalist? An anti-semite? A homophobe?

It seems to me that most journalists, when they have subject saying such terrible things, deal with it sensitively. It's correct to report that Heinz is, in fact, one of the new eugenicists, ignorant and filled with hate for people with Down syndrome and cystic fibrosis. He'd like them to be eradicated, at least for future generations, preferably while making vast sums of money. This is what the new eugenics looks like.

But using this horrible line as your concluding sentence in a section, then blithely starting off into the science of the startup, is not, I think, best journalistic practices. I suspect that Lee, the author and business editor, didn't even notice. She's just interviewing a wunderkind, reporting what he says, trying to sell copy.

And this is part of the mission of the disability rights movement. We need to make it clear that ableist language, ideologies, and discriminatory acts are prejudicial and not to be simply left to hang in mainstream discourse without retort, context, criticism.

One final maxim of mine:

What's going on with prenatal testing right now is a test-run for the future of human procreation. We're failing the test. Left alone, it's going to mean that disability codes for poverty and lack of access to modern medicine, rendering the world even more divided than it is now. We've got a lot of work to do.

Also, Down syndrome is not hell on earth.

Nico and his Sister. 1. It's too snowy for hell. 2. They love each other a lot.


Sandra McElwee said...

I often wonder how "they're such happy children" jives with "hell on earth" and total irradiation"
Great rebuttal and I hope it goes viral--

David Perry said...

Thanks Sandra. Let's keep pushing it.

Deborah said...

I love their hats.

David Perry said...


lydy said...

In my own, confused way, I keep on thinking that we just don't know enough to commit eugenics. We don't really understand what genetic diversity does for us, we have no clear understanding of what is nature and what is nurture, what part of ourselves is our genetic heritage, and what part of ourselves is created out of other things. And we really, really don't understand how things work in the complex, interactive world that is community and culture. Having people of variable capabilities and needing variable types of support and relationships is probably important. The ways we build connections and interdependencies is probably really vital to creating a better world. Diversity is almost certainly far more important than we understand and on several different axes. We need to learn empathy and flexibility, and reducing the types of people in the world probably impairs our ability to do this. The future is utterly undiscovered, and we genuinely don't know what we need to make it better. Eugenics, however politely disguised, is all about reducing diversity, removing things which we define, in this context, as undesirable, while having no idea in the world what the context will be a hundred years from now. I'm not actually opposed to people genetically designing their progeny, should the technology become available, but it scares me.

David Perry said...

Michael Berube writes about that nicely here, Lydy: http://www.theglobeandmail.com/life/parenting/we-still-dont-know-what-normal-really-is/article4266065/?page=all