Ethical issues raised by incorporating personalized language models into brain-computer interface communication technologies: a qualitative study of individuals with neurological disease.
Eran Klein, Michelle Kinsella, Ian Stevens and 1 others
PMID 36403143WHAT IT FOUND
People with neurodegenerative diseases generally support storing personal vocabulary in brain-computer interface devices to maintain identity and relationships.
They want control over privacy, the ability to switch communication styles for different partners, and family involvement in building the language model.
Key findings
01Participants want to preserve their identity and relationships by using personalized vocabulary, including the ability to switch between different communication styles or registers for different people.
02Privacy concerns led participants to desire control over what personal data is used to build the language model, including the ability to edit or delete specific words and phrases.
03Participants viewed family members as important contributors to building the personalized language model, recognizing that family often understands their communication style and values better than they do.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
Participants were mostly white, college-educated, and tech-savvy, so views of other groups may be missing. Most participants did not currently need or use BCI technology, so their views are based on hypothetical future scenarios. Interviewers were part of the research team and clinicians, which may have influenced how open participants were. The study used hypothetical vignettes, which may not fully capture real-world reactions to actual device use.
Declared interests
Funded by NIH Extramural research support. No other conflicts declared in text.
The easy way to misread this
Do not assume these findings apply to people who already use BCI or AAC technology. The participants had not tried these devices, so their concerns about privacy and identity are based on anticipation rather than experience.