Priorities and opportunities for advocacy in SCI: An international web-based review.

Context: For the growing number of people with spinal cord injuries worldwide, advocacy organizations are an invaluable resource of information and education during recovery and rehabilitation.

Objective: To examine the structure, information, and accessibility of websites from international organizations that serve and advocate for individuals with SCI.

Methods: We performed a content analysis of information available from SCI organizations returned from a Google search.

Toward a person-centered ethics framework for autonomy in spinal cord injury research and rehabilitation.

In this paper, we explore how the concepts of autonomy and autonomous choice are understood in the context of spinal cord injury in the academic literature, both in reporting on research results and more broadly on outcomes and quality of life. We find inconsistent, framework-absent portrayals of autonomy as well as an absence of discourse that draws upon ethical constructs and theory. In response, we advance a person-centered framework for spinal cord injury research that combines both lived experience and a disability ethics approach to fill this gap.

Bridges of perspectives: representation of people with lived experience of spinal cord injury in editorial boards and peer review.

Background: Diversity among editorial boards and in the peer review process maximizes the likelihood that the dissemination of reported results is both relevant and respectful to readers and end users. Past studies have examined diversity among editorial board members and reviewers for factors such as gender, geographic location, and race, but limited research has explored the representation of people with disabilities. Here, we sought to understand the landscape of inclusivity of people with lived experience of spinal cord injury specifically in journals publishing papers (2012-2022) on their quality of life.

Open science in play and in tension with patent protections.

The open science (OS) movement has garnered increasing support in academia alongside continued financial and reputational incentives to obtain intellectual property (IP) protections over research outputs. Here, we explore stakeholder perspectives about intersections between OS and IP to inform the development of institutional OS guidelines for the neurosciences in Canada. We held six focus groups and three interviews with 29 faculty members from a major research and clinical center in Canada.

Strengths, gaps, and future directions on the landscape of ethics-related research for spinal cord injury.

Spinal cord injury (SCI) affects between 250,000-500,000 people globally each year. While the medical aspects of SCI have received considerable attention in the academic literature, discourse pertaining to its ethical implications is more limited. The experience of SCI is shaped by intersecting demographic and identity factors such as gender, race, and culture that necessitate an intersectional and value-based approach to ethics-related research that is properly situated in context.