Hashtag who's missing? Lessons for genomic databases.
Angela G Villanueva, Mary A Majumder
PMID 32788131WHAT IT FOUND
Many autistic people using #NotMssng rejected the idea that they were missing something and said research should focus on support, services, and including autistic voices.
Key findings
01Many users using #NotMssng interpreted the project name as saying they were missing something, rejected a deficiency message, and called for autistic voices to be included.
02They said support and services for autistic individuals are lacking and should be the focus of research, and some read cure-seeking as trying to eliminate autistic people.
03The online sample may not represent all autistic people, because posters could include minors and people with more severe traits may be unable to communicate through a computer.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The tweets analysed were linked to #NotMssng on one launch day, so they may not show stable views over time. The number of users who self-identified as autistic or knew someone with autism was based on what users expressed, not verified. The authors could not confirm ages, and some posters may have been minors. The sample may not represent the wider autism community, especially people with more severe traits who cannot post online. Some supporting evidence, including the Facebook survey, was not peer-reviewed. This is a commentary about social media and genomic data planning, not a clinical study of therapy outcomes.
Declared interests
The MSSNG project was sponsored by Autism Speaks, in collaboration with Google, Sick Children's Hospital in Toronto, and DNAStack. The paper is tagged as supported by NIH extramural research.
The easy way to misread this
Do not conclude that autistic people universally reject autism cure research or genomic databases. The paper analysed one hashtag on one day and states that online voices may not represent all autistic people, especially people who are nonverbal, selectively mute, or unable to communicate through a computer.