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El alcance de los medios sociales del programa de investigación All of Us a las poblaciones subrepresentadas:

Dennis J Zhang¹, Michael G Bentz², Janet K Shim³

¹Department of Biological Sciences, Columbia University, 1212 Amsterdam Ave, New York, NY, 10027, United States.

Journal of medical Internet research

|August 22, 2025

Resumen

El Programa de Investigación All of Us (AoURP) utiliza las redes sociales para reclutar a diversos participantes, pero los mensajes a veces carecen de claridad sobre cómo la participación aborda las disparidades de salud. Existen preocupaciones sobre la responsabilidad institucional por los daños de la investigación y las inequidades de los datos.

Área de la Ciencia:

Medicina de precisión
Acceso a la salud digital
Desigualdades en la salud Investigación

Sus antecedentes:

El Programa de Investigación All of Us (AoURP) tiene como objetivo la participación diversa utilizando el alcance digital.
Surgen preocupaciones con respecto a los beneficios tangibles para los grupos subrepresentados y la responsabilidad institucional por los daños causados por la investigación.

Objetivo del estudio:

Examine la conceptualización de AoURP y la implementación de las redes sociales de la "diversidad".
Analizar el uso de mensajes solidarios en los llamamientos de contratación para las poblaciones subrepresentadas.

Principales métodos:

Análisis de métodos mixtos de 380 publicaciones en las redes sociales de AoURP (2020-2021).
Codificado para las categorías y tipos de apelaciones de "subrepresentados en la investigación biomédica" (UBR) (individual vs. solidario).
Análisis temático de los mensajes dirigidos a UBR para el lenguaje relacionado con los beneficios, los objetivos compartidos y la injusticia.

Principales resultados:

"Raza y etnia" (49%) y "edad" (19%) fueron las categorías UBR más enfatizadas en las redes sociales.
Las apelaciones de reclutamiento incluyeron beneficios individuales (resultados genéticos), beneficios comunitarios (predisposiciones a enfermedades), objetivos compartidos (mejorar la salud) y abordar las disparidades.

Conclusiones:

Los mensajes de las redes sociales de AoURP se alinean con los llamamientos solidarios, pero suscitan preocupaciones.
Se observaron vínculos poco claros entre la participación y el tratamiento de las disparidades en materia de salud, así como un reconocimiento incompleto de las funciones institucionales en las disparidades de datos.
La retórica del empoderamiento puede trasladar la carga de corregir las disparidades a los participantes, lo que requiere una consideración cuidadosa para la divulgación futura.

Palabras clave:

Diferencias de datos difusión digital las disparidades de salud Medicina de precisión Reclutamiento para la investigación las redes sociales solidaridad Subrepresentados en la investigación biomédica

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