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Locked Out.

Veronica Johansson, Surjo R Soekadar, Jens Clausen

    Cambridge Quarterly of Healthcare Ethics : CQ : the International Journal of Healthcare Ethics Committees
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    Summary
    This summary is machine-generated.

    Brain-computer interfaces (BCIs) offer communication for individuals with locked-in syndrome (LIS). Addressing social exclusion and human rights violations is crucial for improving their quality of life and autonomy.

    Keywords:
    assistive technologybrain–computer interfacesdisabilityhuman rightsignorancelocked-in syndromeneuroethicsresponsibility

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    Area of Science:

    • Neuroscience
    • Assistive Technology
    • Bioethics

    Background:

    • Locked-in syndrome (LIS) results in severe paralysis, with complete LIS leaving individuals unable to move or speak.
    • Brain-computer interfaces (BCIs) are vital for restoring communication in LIS patients.
    • Societal ignorance and underestimation of LIS individuals create significant social barriers, exacerbating their condition.

    Purpose of the Study:

    • To analyze how LIS individuals face social exclusion ('locked out') beyond their physical condition.
    • To examine how ethical considerations in LIS and BCI literature may inadvertently reinforce confinement.
    • To highlight violations of the UN Convention on the Rights of Persons with Disabilities and assert a moral responsibility to end exclusion.

    Main Methods:

    • Literature review of ethics, LIS, and BCI communication.
    • Analysis of social exclusion, stigmatization, and underestimation of LIS individuals.
    • Examination of BCI's role in communication and human rights.

    Main Results:

    • Existing ethical frameworks and BCI literature may perpetuate LIS confinement.
    • Current practices violate the UN Convention on the Rights of Persons with Disabilities.
    • BCIs are essential for communication but require a novel approach to respect user rights.

    Conclusions:

    • A novel BCI research approach is necessary to prevent human rights violations for LIS individuals.
    • Addressing social exclusion is as critical as medical treatment for LIS.
    • There is a moral imperative to ensure BCIs empower, rather than confine, individuals with LIS.