It’s important to know what ethical research look like and what rights we have around how our personal information is used in research studies. There has been a lot of talk about research lately, and it can be hard to understand it all. When it comes to research about the autistic community, not knowing can be worrying. That’s why we’re holding “What’s Normal?: How Research is Supposed to Work” on Tuesday, May 27 at 4:00pm ET! We’ll be talking about what good research looks like — and how to spot and protect ourselves from bad research.

Over the last few months, there has been a lot of talk about questionable research and people's information being collected and used in harmful ways. We’ve seen stories about groups like the Department of Government Efficiency (DOGE) reading people’s private information. DOGE isn’t a real department, and people are worried about how and why they are looking at people’s information. Last month, the Department of Health and Human Services suggested making a “registry” of autistic people in the US for research purposes, getting information from places like health care records. We have also seen stories about the administration wanting to make lists of immigrants, and parts of the government like the IRS helping them do it — this puts people’s lives and privacy at risk.

In this webinar, we will talk about: 

• What normal research looks like;

• What rights we have around our personal information

• The dangers of bad research

And more!

This webinar is open to everyone, but we especially want to invite self-advocates and allies to attend! 

Register to join us on Tuesday, May 27 at 4-5:30pm ET. The webinar will last around 90 minutes. The webinar will be on Zoom and will have CART (Communication Access Realtime Translation). The webinar will also be shared on Youtube after.

If you have any questions or would like to request any additional accommodations such as ASL interpretation, please email [email protected] by Monday, May 19.

Register for “What’s Normal?: How Research is Supposed to Work” today!

Autistic Self Advocacy Network

PO Box 66122
Washington, DC 20035

 

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