What do you think about the autism registry?

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ASPartOfMe
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09 Jun 2015, 7:52 pm

B19 wrote:
It's chilling.


What I found chilling was my first reaction to this thread, ho-hum, here we go again. Registry is the next step after "tracking devices" . It is probably cheaper and more efficient then what they do now data mining every call every computer click they damm well please.


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09 Jun 2015, 8:45 pm

My diagnosis is nobody's business but mine and any professionals directly and personally involved with me. I neither need nor want to be tracked.



B19
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09 Jun 2015, 9:09 pm

Here is a list of agencies and institutions that are already collecting your personal, medical and ASD information for the Autism Speaks Registry project:

The fourteen AIR-P CREs currently include:
 Arkansas Children’s Hospital/University of
Arkansas
 Children’s Hospital of Los Angeles
 Children’s Hospital of Philadelphia
 Cincinnati Children’s Hospital
 Lurie Family Autism Center / LADDERS /
MassGeneral Hospital
 Nationwide Children’s Hospital / Ohio State
University
 Oregon Health & Science University
 Toronto Autism Network (Holland
Bloorview Rehab, Surrey Place Centre and
the Hospital for Sick Children)
 University of Alberta & Glenrose Rehab
Hospital
 University of Colorado/The Children’s
Hospital
 University of Missouri
 University of Pittsburgh
 University of Rochester
 Vanderbilt University Medical Center

Autism Speaks is offering access to the registry to any researcher interested in "combatting" autism. Don't you have any privacy laws in the USA? We have a Privacy Act in New Zealand that makes this kind of unauthorised data collection and use without consent an illegal act. And it is has "teeth", it's not just window dressing. Are the American civil rights groups aware of this registry? (Probably not). Perhaps they need to be alerted to what is going on?



B19
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09 Jun 2015, 9:18 pm

Google informs me that you do have some legal protections under a Privacy Act. The Registry appears to contradict the spirit and intention of this legislation. Is Autism Speaks a law unto itself? It seems to be that way, and it is immensely concerning.

http://foia.state.gov/Learn/PrivacyAct.aspx



WelcomeToHolland
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09 Jun 2015, 10:27 pm

Where we live it is the other way around; the autism service providers have a registry that the parents can access. That works fine for me and has less of the privacy issues than this one seems to have. I also don't really understand what the point is. How does it link families to services exactly? If it is actually true that researchers can access this registry without contacting first, I find that to be wrong too.

My kids do have medic alert bracelets though, which state autism (as well other things for one of my kids). I feel that it's important that there is some way for a stranger to help my kids if they were ever (god forbid) lost and alone. Both of them have significant communication problems, so it would be extremely difficult for a stranger to help them without some knowledge even if they were conscious. Medic alert has an adequate privacy policy though (and I did actually read it properly before doing it). I know there are still some possible problems that could arise from them wearing this identifying thing, but it is the best idea I've got for their safety.


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animalcrackers
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09 Jun 2015, 10:57 pm

B19 wrote:
 Toronto Autism Network (Holland
Bloorview Rehab, Surrey Place Centre and
the Hospital for Sick Children)
 University of Alberta & Glenrose Rehab
Hospital
[...]


These are in Canada.

B19 wrote:
Autism Speaks is offering access to the registry to any researcher interested in "combatting" autism. Don't you have any privacy laws in the USA? We have a Privacy Act in New Zealand that makes this kind of unauthorised data collection and use without consent an illegal act.


We have privacy laws in Canada, too. I don't really know a lot about them, but my basic understanding is that your medical information can only be shared with others (including other healthcare providers) with your consent, in emergency situations where consent can't be obtained and it's in your best interests to access your medical information in the course of providing you health services, or by court order.

Where did you read that these medical centers are collecting personally identifying information for Autism Speaks without a child/parent/adult's consent?

In terms of the New Jersey registry, on the government website they have this brochure for parents, which states that if you do not want to have your child's personally identifying information added to the registry then it doesn't have to be added and your child's relevent medical information can be added to the registry in a purely anonymous way. I don't like the way they do this, though -- you have to opt-out of being personally identified rather than opt-in, and provide the doctor with a written statement saying you opt-out, and I think it should be the other way around. It also doesn't address the issue of children being unable to remove their names once they reach adulthood.

I think that if they're going to make a law about service provision for autistic people, it should be something like mandating that doctors do needs assessments and offer appropriate referrals at the time of diagnosis -- just get parents/guardians to sign something saying it's been done and tick a box saying they accepted or declined referrals.


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B19
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09 Jun 2015, 11:22 pm

I found the list on one of Autism Speaks web articles. They were bragging about their "success" in establishing the registry plan and the list of providers they have already got on board with providing information is from that article.

So in a nutshell what seems to be going on:

A "charity" is helping itself to the private information of American citizens in contravention of privacy law to further its own loaded eugenically-loaded agenda, under the guise of "supporting further research" to "combat autism".

This is not how charities are meant to operate. Do you have formal guidelines/rules/law for registered charities? Have they contravened those as well? Their arrogance is so great that they appear to think they can do what they like under the guise of "helping" families with ASD children. And they appear to do this unchallenged. Astonishing. There would only be a handful of Western democratic countries in which this would not be regarded as scandalous behaviour.



animalcrackers
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09 Jun 2015, 11:36 pm

B19 wrote:
I found the list on one of Autism Speaks web articles. They were bragging about their "success" in establishing the registry plan and the list of providers they have already got on board with providing information is from that article.


I can't find the page (maybe not looking hard enough....frustrated right now). Could you post a link?


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CockneyRebel
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10 Jun 2015, 12:25 am

I don't like the idea at all. It's like sewing a yellow star on the sleeves of our shirts. That's just an excuse for A$ to try and get rid of us.


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chaosislife
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10 Jun 2015, 7:35 pm

Regardless of how good anyone thinks their security is any database of this sort can and will be accessed by those who seek to harm the people on the database. Even leaving it written down on paper and locked in fort knox wouldn't work cuz it would defeat the purpose of a database.



Sammy1215
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26 Dec 2015, 11:39 am

bump



Fnord
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26 Dec 2015, 12:06 pm

B19 wrote:
Here is a list of agencies and institutions that are already collecting your personal, medical and ASD information for the Autism Speaks Registry project:

The fourteen AIR-P CREs currently include:
- Arkansas Children’s Hospital/University ofArkansas
- Children’s Hospital of Los Angeles
- Children’s Hospital of Philadelphia
- Cincinnati Children’s Hospital
- Lurie Family Autism Center / LADDERS / MassGeneral Hospital
- Nationwide Children’s Hospital / Ohio State University
- Oregon Health & Science University
- Toronto Autism Network (Holland Bloorview Rehab, Surrey Place Centre and the Hospital for Sick Children)
- University of Alberta & Glenrose Rehab Hospital
- University of Colorado/The Children’s Hospital
- University of Missouri
- University of Pittsburgh
- University of Rochester
- Vanderbilt University Medical Center
and WrongPlanet.net - anything you have posted on this website is still here.


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Last edited by Fnord on 26 Dec 2015, 12:22 pm, edited 1 time in total.

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26 Dec 2015, 12:20 pm

Creepy. And what happens when the child is an adult and decides they don't want their information or diagnosis shared like that? What ends up online never goes away.

A healthcare provider having the ability to share a CHILD'S personal medical information or register them in a database... Sounds like something that should be illegal, not mandatory.


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Let me explain: I am not diagnosed nor am I "self-diagnosed," all I know are what my life experiences have been up to this point and a lot of it makes more sense when considered through the lens of autism and sensory processing issues.