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

Abstract

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. Given this background, we conducted a content analysis of academic studies exploring the perspectives and priorities of individuals with SCI published in peer-reviewed journals in the decade between 2012–2021. Terms pertaining to SCI and ethics were combined in a search of two major publication databases. We documented overall publication patterns, recruitment and research methods, reporting of demographic variables, and ethics-related discourse. Seventy (70) papers met inclusion criteria and were categorized by their major foci. Findings reveal a gap in reporting of participant demographics, particularly with respect to race and ethnicity, geographic background, and household income. We discuss these person-centered themes and gaps that must be closed in the reporting and supporting of SCI research.