Looking ahead: planning for the first human intracortical visual prosthesis by using pilot data from focus groups of...

Area of Science:

• Neuroscience
• Biomedical Engineering
• Ophthalmology

Background:

• Intracortical visual prostheses aim to restore vision for the blind.
• Ethical considerations, particularly informed consent, are paramount for human implantation.
• Participatory Action Research (PAR) principles guide ethical participant engagement.

Purpose of the Study:

• To explore the perspectives and concerns of blind individuals regarding intracortical visual prosthesis implantation.
• To identify key elements for achieving robust informed consent in this research context.

Main Methods:

• Conducted three focus groups with potential participants who are blind.
• Utilized principles of the Independent Living movement and PAR to guide discussions.
• Gathered qualitative data on participant thoughts and concerns about the implantation procedure.

Main Results:

• Informed consent requires comprehensive pre-operative learning opportunities.
• Participants expressed motivations including a need to understand their environment, leave a legacy, and regain some visual perception.
• Focus groups are essential for facilitating ethical engagement and understanding participant needs.

Conclusions:

• Extensive pre-operative education is crucial for ethical informed consent in visual prosthesis research.
• Understanding participant motivations is key to successful recruitment and ethical conduct.
• PAR principles enhance the ethical framework for human implant research.