{"id":7261,"date":"2026-05-12T21:34:29","date_gmt":"2026-05-12T21:34:29","guid":{"rendered":"https:\/\/hbcdstudy.org\/?page_id=7261"},"modified":"2026-05-12T21:46:37","modified_gmt":"2026-05-12T21:46:37","slug":"open-science","status":"publish","type":"page","link":"https:\/\/hbcdstudy.org\/es\/open-science\/","title":{"rendered":"Open Science"},"content":{"rendered":"
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Estimado\/a los participantes del HBCD:<\/p>\n

Reciba un cordial saludo de su equipo del estudio HBCD. Agradecemos profundamente su participaci\u00f3n en el estudio y queremos compartir con usted informaci\u00f3n importante.<\/p>\n

Le escribimos para recordarle que el estudio HBCD comparte la informaci\u00f3n que recopilamos (datos) con otros investigadores autorizados por los Institutos Nacionales de la Salud (National Institutes of Health, NIH). Estos datos est\u00e1n \"anonimizados\". Esto significa que no<\/strong> incluyen detalles que pueden identificar directamente a usted o a su hijo\/a, como nombre, informaci\u00f3n de contacto, fecha de nacimiento, direcci\u00f3n o fechas
\nde las visitas al estudio. Para acceder a los datos del estudio, los investigadores y sus empleadores firman un contrato. En este contracto, aceptan seguir las reglas para el uso de los datos.<\/p>\n

Compartir datos aumenta el impacto de su participaci\u00f3n en el estudio. Cuando muchos cient\u00edficos responsables pueden utilizar los datos anonimizados del HBCD, pueden descubrir r\u00e1pidamente nuevos conocimientos sobre la salud y el desarrollo infantil. Peri\u00f3dicamente, les informaremos sobre los descubrimientos y avances posibles gracias a los datos del HBCD.<\/p>\n

Existe otro estudio de los NIH llamado El Estudio del Desarrollo Cognitivo y Cerebral del Adolescente (ABCD, por sus siglas en ingl\u00e9s). El estudio ABCD es similar a HBCD, pero incluye a ni\u00f1os de mayor edad. A principios de este a\u00f1o, el New York Times inform\u00f3 que un investigador obtuvo datos del estudio ABCD de manera indebida. Este investigador no obtuvo nombres ni otra informaci\u00f3n que pudiera identificar directamente
\na ning\u00fan participante. Sin embargo, este investigador y un peque\u00f1o grupo de personas usaron mal los datos de ABCD para promover una agenda espec\u00edfica sobre las diferencias raciales. Los investigadores de HBCD y ABCD rechazan totalmente ese trabajo por ser cient\u00edfica y moralmente incorrecto. Lamentablemente, este uso indebido tambi\u00e9n desv\u00eda la atenci\u00f3n de los miles de investigadores que utilizaron los datos de
\nABCD de forma adecuada y responsable para el avance de la ciencia.<\/p>\n

La investigaci\u00f3n poco \u00e9tica no incluy\u00f3 ning\u00fan dato de HBCD<\/strong>. Sin embargo, entendemos que le preocupe que sus datos puedan ser utilizados indebidamente en el futuro. Para ayudar a prevenir el uso indebido, los NIH han cambiado recientemente la forma en que se puede acceder a los datos. Ahora cuenta con un \u201ccentro de datos\u201d en internet muy seguro para compartir datos anonimizados de HBCD y ABCD con otros
\ninvestigadores. Este nuevo sistema utiliza medidas de seguridad s\u00f3lidas. Adem\u00e1s, antes de autorizar a los cient\u00edficos a usar los datos, se verifica si han hecho alg\u00fan uso indebido de datos o si han cometido mala conducta cient\u00edfica en el pasado. Tambi\u00e9n se requiere capacitaci\u00f3n sobre el uso responsable de los datos para todas las personas que los utilicen. No obstante, incluso con estas s\u00f3lidas protecciones, existe una
\nprobabilidad muy baja de que personas poco \u00e9ticas hagan uso indebido o representen de manera incorrecta los datos de HBCD.<\/p>\n

Tenga en cuenta que los investigadores de HBCD y los NIH est\u00e1n trabajando activamente en nuevas formas de prevenir y responder al posible uso indebido de datos. Si alguna vez escucha algo sobre HBCD que le preocupe, o si tiene alguna pregunta sobre esta carta, comun\u00edquese con su sitio<\/a>.<\/p>\n<\/div>\n<\/div><\/div><\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"

Estimado\/a los participantes del HBCD: Reciba un cordial saludo de su equipo del estudio HBCD. Agradecemos profundamente su participaci\u00f3n en el estudio y queremos compartir con usted informaci\u00f3n importante. Le escribimos para recordarle que el…
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