Neurotechnology is an emerging field that explores different techniques for studying or modifying the way our brain and nervous system work. As it is advancing at a rapid rate, neurotechnology offers a host of exciting possibilities but also raises complex ethical challenges.
In response to this, UNESCO has been working on the first draft of the Recommendation on the Ethics of Neurotechnology since last year. This document aims to serve as a universal framework guiding the responsible development and application of neurotechnology across the globe, ensuring that it benefits all of humanity.
At the moment, the draft is currently undergoing consultation with Member States, with the final version expected to be adopted by late 2025. During the Global Consultation round in July 2024, the European Network on Independent Living has also provided some comments on the draft.
We welcome its strong emphasis on directly and actively involving end-users in the development and governance of neurotechnology. The draft Recommendation has touched on multiple ethical issues, including the risk of amplifying technology-driven inequality and the intersection of artificial intelligence (AI) with neurotechnology. ENIL’s previous study has also explored the impact of AI on disabled people and independent living – you can read more about the study here.
However, we note that the draft Recommendation does not sufficiently address the disproportionate impact neurotechnology would have on disabled people in several key areas. To create a truly inclusive and equitable international framework, we have reiterated the need to mainstream the experience and interests of disabled people across policy areas, as well as different stages of developing neurotechnology.
Brain-Computer Interface and the Potential for Independent Living
Recently, a new advancement in neurotechnology called the Brain-Computer Interface (BCI) has garnered considerable attention. This technology interprets brain activities and enables users to control external devices, such as computers and robotic limbs, without any physical movement. It can also help restore lost sensations, like the sense of touch. This innovation is believed to open new avenues for assistive devices, especially for individuals with mobility, sensory, or communicative disabilities.
While BCIs are not yet available on the market, many disabled users have tested this frontier technology in clinical trials. However, as disabled people are directly involved as the first and primary users of this technology, how well do these trials truly account for the interest of disabled people and their perspective on independent living?
Vy Nguyen, a former intern at ENIL, is conducting research to understand how disabled people view BCI clinical trials. Your insights will help to understand the extent to which such innovations in neurotechnology are developed in a way that genuinely respects the experience of those they are designed for.
If you identify yourself as a person with motor, sensory or communicative disability – types of disability that BCI trials often focus on, please take a few minutes to join in this survey.
The survey is also available in plain language here.
Respondents interested in a one-on-one interview can register via the link available at the end of the survey.
For any further inquiries or requests for accommodation to participate in the survey, please contact the researcher at nguyen_vy@student.ceu.edu.
