"Re-identifying yourself": a qualitative study of veteran views on implantable BCI for mobility and communication in ALS.
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 under...
| Publicado en: | Disability & Rehabilitation: Assistive Technology Vol. 17; no. 7; pp. 807 - 815 |
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| Autores principales: | , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Taylor & Francis Ltd
Oct2022
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=158790469&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 158790469 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 17483107 1X04 jtl: Disability & Rehabilitation: Assistive Technology issn: 17483107 maglogo: Y pubinfo: dt: Oct2022 vid: 17 iid: 7 pid: 377 pub: Taylor & Francis Ltd place: Philadelphia, Pennsylvania artinfo: ui: 158790469 145767986 158790469 158790469 10.1080/17483107.2020.1817991 158790469 ppf: 807 ppct: 8 formats: fmt: – @attributes: type: T – @attributes: type: P tig: atl: "Re-identifying yourself": a qualitative study of veteran views on implantable BCI for mobility and communication in ALS. aug: au: Versalovic, Erika Diamond, Melissa Klein, Eran affil: Department of Philosophy, University of Washington, Seattle, WA, USA sug: subj: Veterans Psychosocial Factors Amyotrophic Lateral Sclerosis Physical Mobility Evaluation Human Semi-Structured Interview Thematic Analysis Qualitative Studies Decision Making Technology Utilization ab: 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. Semi-structured interviews were conducted with sixteen (n = 16) individuals, and transcripts were analysed using a modified grounded theory approach. 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. 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. 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. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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