Abstract
PURPOSE: To examine the views of individuals with neurodegenerative diseases about ethical issues related to incorporating personalized language models into brain-computer interface (BCI) communication technologies. METHODS: Fifteen semi-structured interviews and 51 online free response surveys were completed with individuals diagnosed with neurodegenerative disease that could lead to loss of speech and motor skills. Each participant responded to questions after six hypothetical ethics vignettes were presented that address the possibility of building language models with personal words and phrases in BCI communication technologies. Data were analyzed with consensus coding, using modified grounded theory. RESULTS: Four themes were identified. (1) The experience of a neurodegenerative disease shapes preferences for personalized language models. (2) An individual's identity will be affected by the ability to personalize the language model. (3) The motivation for personalization is tied to how relationships can be helped or harmed. (4) Privacy is important to people who may need BCI communication technologies. Responses suggest that the inclusion of personal lexica raises ethical issues. Stakeholders want their values to be considered during development of BCI communication technologies. CONCLUSIONS: With the rapid development of BCI communication technologies, it is critical to incorporate feedback from individuals regarding their ethical concerns about the storage and use of personalized language models. Stakeholder values and preferences about disability, privacy, identity and relationships should drive design, innovation and implementation.IMPLICATIONS FOR REHABILITATIONIndividuals with neurodegenerative diseases are important stakeholders to consider in development of natural language processing within brain-computer interface (BCI) communication technologies.The incorporation of personalized language models raises issues related to disability, identity, relationships, and privacy.People who may one day rely on BCI communication technologies care not just about usability of communication technology but about technology that supports their values and priorities.Qualitative ethics-focused research is a valuable tool for exploring stakeholder perspectives on new capabilities of BCI communication technologies, such as the storage and use of personalized language models.