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sharing data. or not.
2009-Mar-18, Wednesday 09:37 amThe group called "Autism Speaks" has a really bad reputation amongst the autistic rabble rousers (otherwise known as self-advocates), about the same reputation as "Cure Autism Now" does. The usual complaint is that they want to eliminate autism, and they have no autistic people on their board or in their programs. The rallying cry is, "Autism Speaks does not speak for me!"
Well, I ran into another problem with the group. They solicit genetic information from autistic people (and their neurotypical families), but they don't seem to offer their results to the autistic population either. They host the project called "Autism Genetic Resource Exchange" (AGRE), but I can't tell what's being offered in exchange for our dna data. I wanted to use their database to check for SNP addresses that I can then compare to my results from 23andme.com. They publish no such information that I can find.
http://www.autismspeaks.org/science/programs/agre/index.php
They do have a webpage form where I can apply for access to AGRE data.
http://www.agre.org/application/app.cfm?do=app
For "Project Abstract", I submitted:
For "Intended Use of database", I submitted:
Afterwards, I found that they have a 10-page contract that I have to print, sign, and mail off to them. The application does say, "AGRE shall notify Principal Investigator in writing when action has been taken on said Application." Guess I'll force them to answer my request by printing it out and mailing it off.
Their website does have a link for downloading data. It leads to a site called ISAAC. It says that ISAAC is founded and funded by "Cure Autism Now". Remember them from the introductory paragraph? *sigh*
https://www.autismtools.org/
All I want is a SNP list to add to my own compilation. Criminy.
Well, I ran into another problem with the group. They solicit genetic information from autistic people (and their neurotypical families), but they don't seem to offer their results to the autistic population either. They host the project called "Autism Genetic Resource Exchange" (AGRE), but I can't tell what's being offered in exchange for our dna data. I wanted to use their database to check for SNP addresses that I can then compare to my results from 23andme.com. They publish no such information that I can find.
http://www.autismspeaks.org/science/programs/agre/index.php
They do have a webpage form where I can apply for access to AGRE data.http://www.agre.org/application/app.cfm?do=app
For "Project Abstract", I submitted:
I will compare my genotype data against the database of known SNP addresses for autism susceptibility.
For "Intended Use of database", I submitted:
I have an autism diagnosis. I am being genotyped by 23andme.com. I want to compare my results against known autism-related SNP addresses. Your website solicits autism information from people with the diagnosis, but it doesn't advertise how to get information back out from these studies. I'm filling out this research form trying to gain a list of those genetic addresses that you've identified from the autistic population. Your name does suggest that you are an "Exchange", so I'm hoping that you provide information back to the population from which you get your data.
Afterwards, I found that they have a 10-page contract that I have to print, sign, and mail off to them. The application does say, "AGRE shall notify Principal Investigator in writing when action has been taken on said Application." Guess I'll force them to answer my request by printing it out and mailing it off.
Their website does have a link for downloading data. It leads to a site called ISAAC. It says that ISAAC is founded and funded by "Cure Autism Now". Remember them from the introductory paragraph? *sigh*
https://www.autismtools.org/
All I want is a SNP list to add to my own compilation. Criminy.