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

Abstract

In planning for our research team's first human implant of a technologically advanced intracortical visual prosthesis we have conducted three focus groups with blind persons from a pool of likely participants. Guided by the principles of the Independent Living movement and Participatory Action Research (PAR), we asked the participants to share their thoughts and concerns about the procedure. The preliminary results reveal that achievement of the desired highest ethical of informed consent will require extensive pre-operative learning opportunities, such as those provided by these focus groups. Persons who are blind may be motivated to participate in research like this based on a need to know, understand, and explore ones environment, to leave a legacy, and to experience some restored perception.

Keywords:

• Intracortical visual prosthesis
• focus groups
• PAR

Acknowledgements

This work was funded by the Brain Research Foundation, the Prizker-Galvin Challenge Fund, and private donations. The authors are grateful for Professor Ken Schug's close reading of the manuscript and his suggested clarifications.