SCCM Resource Library-The Ethics of Research Consent Form Languages in the Pediatric ICU

Pdf Summary

The multicenter study in Miami-Dade County aims to explore the effects of therapeutic hypothermia on neurologic outcomes in pediatric patients with traumatic brain injury. A critical ethical issue arises from the fact that consent forms are only available in English and Spanish, potentially excluding non-English and non-Spanish speakers from the study, despite Miami-Dade's diverse demographics where many residents speak Haitian Creole or French.<br /><br />The ethics of limiting participation based on language is scrutinized for potentially creating bias and inequity. Children, already a vulnerable group, rely on surrogates or legally authorized representatives for consent, but the language barrier might exclude significant community segments, violating principles of justice and equity in research. Justice in research mandates fair access to participation regardless of linguistic demographics.<br /><br />Historical efforts to rectify such exclusion include the 2003 Institute of Medicine report, highlighting the need for inclusivity in medical research to reduce disparities. The National Institute on Minority Health and Health Disparities emphasizes the inclusion of minority and health disparity populations in NIH-funded research to ensure culturally competent interventions and equitable scientific insight.<br /><br />Addressing these disparities, community engagement is recommended, encouraging study designers to work with local leaders and translate consent forms into locally spoken languages, ensuring distributive justice and minimizing bias. Such measures can bridge gaps in health equity, enhance ethical standards in research, and improve collaboration among academic and local communities, which is crucial for obtaining valid, representative data and advancing medical interventions and technologies.

Asset Subtitle

Research, Ethics End of Life, Pediatrics, 2023, 0:03:50

Asset Caption

"This article was first published in the Summer 2023 issue of Critical Connections.

Children are deemed at risk of exploitation due to their varied stages of development depending on their age and underlying condition. Their at-risk status precludes them from meeting criteria for informed and valid consent. Their interests are therefore guarded by surrogates, usually parents, who must judge risks and benefits of study enrollment. This article discusses the ethics of excluding patients based on the language of consent forms.

Critical Connections, the critical care industry’s only newsmagazine, provides information on cutting-edge topics in critical care useful to the entire multiprofessional team."

Meta Tag

Content Type Article

Knowledge Area Research

Knowledge Area Ethics End of Life

Knowledge Area Pediatrics

Membership Level Associate

Membership Level Professional

Membership Level Select

Tag Pediatrics

Tag Medical Legal Issues

Tag Research

Year 2023

Keywords

therapeutic hypothermia

pediatric traumatic brain injury

ethical issues

language barriers

informed consent

justice in research

health disparities

community engagement

cultural competence

Miami-Dade County

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