Uploaded May 2025 | Updated September 2026, 14 hours ago
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 held “What’s Normal?: How Research is Supposed to Work"! We talked 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 talked about:
* What normal research looks like;
* What rights we have around our personal information
* The dangers of bad research
And more!
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 held “What’s Normal?: How Research is Supposed to Work"! We talked 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 talked about:
* What normal research looks like;
* What rights we have around our personal information
* The dangers of bad research
And more!
