Controversy over Google/Autism Speaks 'MSSNG' Project collaboration...

[AGXStarseed]

(The following is two articles from Autism Daily Newscast. Links to original sources will be provided).


Researchers to use Google’s cloud platform to crack autism genetic code


Autism advocacy group Autism Speaks said Tuesday that it will be partnering with tech giant Google in a large-scale research that would attempt to crack the genetic codes for autism. In June 2014, Autism Speaks announced its collaboration with Google to store sequenced data from MSSNG on the Google Cloud Platform.


Researchers for the study will be collaborating with Google as the company lends its Google Genomics technology in an attempt to uncover some of the mystery that covers the autism spectrum disorder. About 10,000 individuals with autism, including their family members, will be taking part in the research that’s poised to be a breakthrough in understanding the mysterious condition.


Autism Speaks Chief Science Officer Rob Ring told WIRED Magazine:


“We believe that the clues to understanding autism lie in that genome. We’d like to leverage the same kind of technology and approach to searching the internet every day to search into the genome for these missing answers.”


The organization’s collaboration with Google will not only make the research dramatically easier and faster, it will also make the research incredibly cheaper.


Before Google’s collaboration with Autism Speaks, the funding required for a research of the same gravity, such as the Human Genome Project, was at $3 billion. But with Google’s technology, the research can be done for as little as $2,500.

The technology that will aid Autism Speaks researchers will work very similarly to how Google organizes millions of data available on the internet. The same technology will be applied to help researchers find sections in the genomes that possess common variations, and search for sequences and regions on the genomes that may be of particular interest to them.


Autism Speaks President Liz Feld hopes that the research would pave the way for more individualized and tailored treatments for individuals with autism in the future. She says:


“What matters most to us is that this research is going to allow us to uncover and understand the various forms of autism.”

The announcement does not come without its critics. Boycott Autism Speaks immediately launched its own response on their Facebook Page with the following image



SOURCE ARTICLE: Researchers to use Google’s cloud platform to crack autism genetic code




Autism Speaks #MSSNG Project Sparks Controversy

Recently Autism Daily Newscast printed a story about #MSSNG, an awareness campaign launched by Autism Speaks to gain support for their initiative to develop the world’s largest database of sequenced genomic information on individuals diagnosed with autism spectrum disorder.
Autism Speaks is partnering with Google to create an open database containing genetic information from over 10,000 individual with autism that can be used in future research geared towards discovering any genetic components of the disorder.

The #MSSNG campaign has sparked the ire of many adults in the autism community, including author and former Autism Speaks member John Elder Robison. Mr. Robison’s objections to the campaign are not against the research itself, though he does explain why he believes this project will not be particularly helpful to individuals who are currently living with autism, but rather against the use of #MSSNG as a tool for awareness. In a blog post dated Dec. 9, 2014, he writes,


“I’ll bet every autistic kid in America knows how it feels to be told we were missing some of our marbles growing up, and reminding us of that in the context of a research initiative is at best insensitive and at worst seriously offensive.”

He goes on to say,


“Genetics is important. But it is not job #1 for this community. . . We should not be trying to ‘solve the autism riddle.’ We should not be ‘looking for missing pieces of the autism puzzle’. We should be Helping Autistic People – Right Now.”

Other took to social media to express their discontent. The counter-hashtag #NOTMSSNG has been trending on Facebook and Twitter, spreading awareness of the autistic community’s anger at being characterized as “missing” or “not all there.” The organization Boycott Autism Speaks launched a meme stating, “Autism Speaks has launched, “Missing”, a new highly publicized assault of the humanity of autistic people. Join #Boycott Autism Speaks on Friday on Twitter as we occupy their hashtag #MSSNG and answer with #NOTMSSNG.”

Individuals and organizations alike took to Twitter to express their discontent. Common themes included “I am not missing” or “I am only missing from the discussion at Autism Speaks.” Many also expressed concern over Autism Speaks’ tendency to characterize autism as a disease, and as a condition that needs to be obliterated.

The rift between Autism Speaks and certain adult advocacy groups is nothing new, and it’s clear that the two camps will not be finding common ground anytime soon. While the genome project may have long-term benefits to the autism community, the choice of #MSSNG as a marketing tool has clearly struck a nerve. Many feel that the lack of representation by individuals with autism is to blame.

John Elder Robison says,

“So what can we do, to avoid more public relations debacles like this, which hurt us all? We can bring autistic people into positions of authority in all the agencies who speak for and about the autism community, and who fund research into autism.”


SOURCE ARTICLE: Autism Speaks #MSSNG Project Sparks Controversy

 

[AsheSkyler]

Some times I think Google just lies awake at night thinking of more ways to become disliked. Heh, I think my passionate dislike of Google is on par with most autistic folks' passionate dislike of Autism Speaks. Or A$ as I often see it abbreviated.

I think a better hashbrown/tatertot/whatever is #XCLD for "we exclude all autistic input during our crazy ideas".

 

[gonzerd]

We believe that the clues to understanding autism lie in that genome.

I'd say the clues to understanding autism first of all lie in talking and listening to people who are autistic!

That's all. Well, that and that Autism Speaks doesn't speak for me, but that's a given.

Over.

 

[Heissonear]

I find Autism Speaks repulsive.

No doubt genetics may play a role, but I do not think genetics is the bases or what to try and control "to prevent".

I think God has a range in who and how people are - with intended purpose.

Take for example how we all look different. There are not two or more people who look like Obama, JFK, etc. Genetics produces distinctions that we should accept.

Autism Speaks seems bent on Autism as a disorder, like the recent DSM-5 promotes. I do not see my problems as disorders but personal differences, like some are prone to easily sunburn, require more sleep, humidity effects their hair more, etc. outward genetic differences we learn to live with.

 

[BuskerSteve]

Maybe there is always something missing?

 

[Aspergirl4hire]

Anybody who grabs an autistic child to make her look them in the eye so that they can "see her adorable face" is unqualified to lead any discussion anywhere about how to deal with autistic people.

And I am not "missing" - I'm ignored.

 

[Aspergirl4hire]

It's too bad real research is driven by the perception that there's money to be made by a "cure." What we actually need is to know before we even consider whether we need a fix.

I finally posted a review of the book Loud Hands for moderator review. This book argues that "curing" is not what we need, and explains the difference between the real problem and the real symptom--as opposed to the fake problem and the false solution. And why we can't quit protesting this "missng" misnomer. We're "missng" because THEY AREN"T LISTENING.

grrrrrrr....

 

[Tom]

I think a better hashbrown/tatertot/whatever is #XCLD for "we exclude all autistic input during our crazy ideas".

The mind set there at Autism Speaks, the logic, is such that we could never be truly involved in the decision making process. To them we are not of sound mind.

 

[Aspergirl4hire]

Homocidal Ideation comes up a lot for parents of autistic children. Deadly parents get sympathy because autistic kids are portrayed as "low functioning and high maintenance" (quoted from Loud Hands: autistic people, speaking, in Zoe Gross's essay "Killing Words.")

Maybe there's something positive to be said for Google's alleged attempt to drop associating autistism and death: not exposing positive reviews of people who kill their kids. Or maybe this is just a way to hide what normal people are willing to do to people who can't conform and yet don't do deadly harm. Killing words, indeed.

 

[OliveOilMom]

I recently spoke with someone at Autism Speaks about some of the issues that a lot of folks in the community have about them. She was interested in sitting down and talking about a lot of these issues. Then I got this bug that has had me sick for weeks and I haven't gotten back in touch with her. I need to do that. She's very interested in having feedback and a dialogue about the issues, and they are also going to be doing a lot more education on AS and adults on all parts of the spectrum. Showing adults with AS who are functioning members of society is one of the things she said they were interested in doing. I don't much have a problem with them.

I had heard about the missing thing, but I honestly thought it was something about maybe an alert system for when autistic kids go missing or something. I thought maybe they were going to have an alert and a picture and information put up maybe where they put the Google doodle for holidays. That goes to show how much I pay attention to whats going on in the world, doesn't it? Then again, I don't have cable and haven't seen the news since my mother died last May. I really need to get cable.

As for the genome thing, it doesn't say anything either way about my humanity of lack thereof. It's just people doing genetic research and that's what genetic researchers do. They will eventually find the gene for everything and develop a prenatal test out of that too probably. My great grandkids will end up having to choose whether or not to have their baby if it's going to have straight hair, or a medium intelligence, or the gene for breast cancer, or the predisposition to have irritable bowel syndrome. It's not just autism, folks. It's everything out there. Every single thing that can be seen as a drawback will eventually have a target on it. What we have to do is show by our actions that we aren't what they think we are. Fussing because they are doing this isn't going to do anything except make them wonder why we are so adamant about them doing that about our genetics. We need to get the word out there that are lots of us out there who they see every day and interact with so that when people hear the word autism they don't think about that one kid that they always show in tv and movies whenever "autistic kid" is portrayed or somebody in an institution.

If there were one campaign that would go a very long way to help change our image and educate people about autism I think it would be something like a commercial where teenagers and adults with AS would be filmed doing jobs or just whatever and then say to the camera "I am Autism" one person after another and then at the end of the commercial it could just be written on the screen "Autism, it's not always what you think it is". Maybe Autism Speaks could do something like that, they certainly have the funding for it. Who knows, maybe that idea could be the start of a late in life career for me on Madison Avenue, Lord knows I've got plenty of clothes to dress like the gals in "Mad Men". ;-)

 

[KinksFan]

The best way that A$ can get clues is by talking to us and getting to know us.

 

[OliveOilMom]

The best way that A$ can get clues is by talking to us and getting to know us.

I agree. That lady was interested in doing that and starting a bigger dialogue with more of us, but I got sick and didn't call or email her again yet.

I steered her toward WP and she was going to look at it, and I've gotten a phone message from her but like I said I haven't gotten back to her yet. I should probably let her know I've left there and am here now, but I told her to check the news and media representation subforum to get the overall tone of how a lot of people in the community feel about Autism Speaks, and that there are tons of threads in it about them with information about what people think.

She actually has an autistic child and she works for them. She kind of feels the way a lot of people do about a few points and has made her feelings known. She said that it's needed to have communication with folks in the community and I'd love to help facilitate that, and Autism Speaks is very open to it and eager to, but you see the response I got from the folks at WP about that.