Ethical issues raised by incorporating personalized language models into brain-computer interface communication technologies: a qualitative study of individuals with neurological disease.

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. Fifteen semi-structured interviews and 51 online free response surveys were completed with in...

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Published in:Disability & Rehabilitation: Assistive Technology Vol. 19; no. 3; pp. 1041 - 1052
Main Authors: Klein, Eran, Kinsella, Michelle, Stevens, Ian, Fried-Oken, Melanie
Format: research tables/charts Journal Article
Published: Taylor & Francis Ltd Apr2024
Online Access:View this record in EBSCOhost
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      dt: Apr2024
      vid: 19
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      pub: Taylor & Francis Ltd
      place: Philadelphia, Pennsylvania
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        10.1080/17483107.2022.2146217
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        atl: Ethical issues raised by incorporating personalized language models into brain-computer interface communication technologies: a qualitative study of individuals with neurological disease.
      aug:
        au:
          Klein, Eran
          Kinsella, Michelle
          Stevens, Ian
          Fried-Oken, Melanie
        affil: Department of Neurology, Oregon Health & Science University, Portland, OR, USA
      sug:
        subj:
          Neurodegenerative Diseases In Adulthood
          Natural Language Processing Ethical Issues
          Brain-Computer Interfaces
          Communication
          Technology
          Patient Attitudes
          Human
          Male
          Female
          Adult
          Qualitative Studies
          Semi-Structured Interview
          Surveys
          Questionnaires
          Grounded Theory
          Thematic Analysis
          Descriptive Statistics
          Comparative Studies
          Feedback
          Funding Source
          Adult: 19-44 years
          Male
          Female
      ab: 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. 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. 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. 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. Individuals 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.
      pubtype: Academic Journal
      doctype:
        research
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        Journal Article
      ougenre: Article
    language: English
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