CEU Electronic Theses and Dissertations, 2025
| Author | Nguyen, Thi Thao Vy |
|---|---|
| Title | A Disability-Centered Approach to Research Ethics Of Emerging Technology: The Case of Therapeutic Misconception In Brain-Computer Interface Trials |
| Summary | The inclusion of people with disabilities in the development of emerging technologies is a crucial step towards building a more inclusive and equitable future. However, this involvement can be counterproductive if their lived experience and disability-related knowledge are not adequately taken into account. Among other things, their disability “standpoint” may prompt them to perceive the opportunity of participating in experiments of new technology as a shortcut to overcome the persistent barriers that hinder people with access needs from fully participating in life. This thesis examines the risk of having therapeutic misconception – the false expectation that participation in experimental studies will give direct, personal benefits – among people with diverse disabilities, in the specific case of an emerging neurotechnology called implantable Brain-Computer Interface (BCI). By allowing direct connection between a human brain and external devices, this technology is envisaged to be a powerful, innovative assistive tool that grants greater independence for users with disabilities. Via a public survey distributed to adults with disabilities across Europe, the study found a concerning level of therapeutic misconception surrounding a hypothetical BCI trial. Even with respondents who are already receiving adequate support from their local community and personal relationships, the risk of having exaggerated hope for such experimental trials is notable. The research also attempts to showcase the distinctiveness and value of the disability perspective by exploring the key areas of concern that arise when individuals with disabilities consider whether to adopt a (trial) BCI implant. As one of the few empirical studies that center the voice of people with disabilities in the context of technological development, this thesis highlights the need to reform ethical research practices through the lens of those who have been historically marginalized. More specifically, it underlines the importance of informed consent protocols to actively and meaningfully engage with the lived experiences of vulnerable research participants. This is vital to ensure that the advancement of scientific knowledge aligns more closely with the practical needs of its intended beneficiaries, while serving the interests of society as a whole, including the most vulnerable groups. |
| Supervisor | Sandor, Judit |
| Department | Political Science MA |
| Full text | https://www.etd.ceu.edu/2025/nguyen_vy.pdf |
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