“Re-identifying yourself”: a qualitative study of veteran views on implantable BCI for mobility and communication in ALS

Abstract

Objectives Brain-computer interface (BCI) technology to assist with mobility and communication is an active area of research in amyotrophic lateral sclerosis (ALS). Implantable BCI offers promise for individuals with severe disease, such as locked-in syndrome, but also raises important ethical issues. We undertook in-depth qualitative interviews with ALS patients from a Veterans Administration hospital ALS multi-disciplinary clinic and explored their perspectives on issues of identity, privacy, enhancement, informed consent, and responsibility related to implantable BCI. Methods Semi-structured interviews were conducted with sixteen (n = 16) individuals, and transcripts were analysed using a modified grounded theory approach. Results Emergent themes included: (1) attitudes towards BCI were characterised by fear, hope, and hesitation about adoption of BCI technology; (2) analogies to other technologies were a useful tool in understanding and communicating opinions about ethical issues in BCI; (3) concerns about potentially socially stigmatising effects of BCI and the burden of adjustment to new therapeutic devices were important considerations to be weighed against the potential functional benefit of BCI use; (4) therapeutic decision-making in ALS often intimately involves loved ones; and (5) prospective decision-making about BCI was significantly affected by weighing the timing of the intervention with the progression of illness. Conclusion The interest in BCI and views on ethical issues raised by BCI is moderated by the experience of living with ALS. The findings from this study can help guide the development of implantable BCI technology for persons with ALS. Implications for rehabilitation Loved ones will play crucial roles in helping patients think through the possible benefits and burdens of getting a BCI device. Providers should consider how the ideal timing for getting an implantable BCI device will vary based on the priorities of persons with ALS and their disease stage. Concerns about social stigma, burden of adjustment, and the desire to maximise time left with loved ones may outweigh the potential functional benefits of BCI devices for some persons with ALS.