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<li class="breadcrumb-item active is-active" aria-current="page">El Programa Científico <em class="aou-text px-1">All of Us</em> de los NIH ha entregado los primeros resultados de pruebas genéticas a participantes</li>
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<h1 class="page-title">El Programa Científico All of Us de los NIH ha entregado los primeros resultados de pruebas genéticas a participantes</h1>
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December 10, 2020
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<p>Los resultados personalizados incluyen datos sobre ascendencia y rasgos genéticos. Otros resultados relacionados con la salud están por venir.</p>
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<p><a href="/news-events-and-media/announcements/nihs-all-us-research-program-returns-first-genetic-results-participants">In English</a></p>
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<p>El Programa Científico <em>All of Us</em>, un estudio patrocinado por los Institutos Nacionales de la Salud (NIH, por sus siglas en inglés), ha comenzado a entregar resultados genéticos a los participantes que han proporcionado muestras biológicas para investigaciones científicas. Este esfuerzo refleja la prioridad del programa de devolver información a sus voluntarios. Inicialmente, los participantes pueden elegir recibir información acerca de su procedencia genética y características, mientras que los resultados relacionados con la salud estarán disponibles más adelante.</p>
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<p>El Programa Científico <em>All of Us</em> está trabajando para construir una comunidad diversa de un millón o más de participantes de distintas regiones de los Estados Unidos para ayudar a los investigadores científicos a aprender más acerca de cómo la genética, el medio ambiente y el estilo de vida afectan la salud. Los participantes comparten información de distintas maneras las cuales incluyen encuestas de la salud, registros electrónicos de salud, muestras biológicas (sangre, orina o saliva) y más. La información personal que pueda identificar a los participantes se elimina de los datos y se envían al Centro para investigadores de <em>All of Us</em>.</p>
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<p>Como parte de sus valores fundamentales, el programa se compromete a asegurar que los participantes tengan acceso a su propia información y muchos participantes han expresado un gran interés en comprender lo que su ADN puede decirles.</p>
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<p>"Estamos cambiando la perspectiva de la investigación científica", dijo Josh Denny, M.D., director ejecutivo de <em>All of Us</em>. "Los participantes son los colaboradores más importantes en este esfuerzo y sabemos que muchos de ellos están emocionados por recibir sus resultados genéticos y aprender sobre la ciencia que están haciendo posible. Estamos trabajando para proporcionar esa información valiosa de una manera responsable".</p>
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<p>El detallado análisis genético del programa incluye tanto secuenciación de genoma completa y genotipificación. La secuenciación de genoma completa se enfoca en más de 3 mil millones de pares base del genoma humano, mientras la genotipificación analiza millones de variaciones genéticas con un enfoque en las diferencias genéticas más comunes.</p>
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<p>Para entregar información genética, el programa ha desarrollado un proceso de consentimiento informado riguroso que proporciona a los participantes información y la capacidad de elegir si quieren recibir sus resultados y cuáles quieren recibir. El programa también proporciona acceso a asesores genéticos para ayudar a responder las preguntas de los participantes y sus proveedores de salud.</p>
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<p><em>All of Us</em> se asoció con una red de colaboradores en todo el país para apoyar este esfuerzo, incluido Color, una empresa de tecnología de la salud, para devolver los resultados personalizdos sobre ascendencia y características genéticas, y algunos de los principales centros de genómica para generar los datos genéticos, entre ellos la Baylor College of Medicine, el Broad Institute y el Northwest Genomics Center de la University of Washington, junto con sus propios colaboradores.</p>
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<p>"Con el Programa Científico <em>All of Us</em>, estamos comenzando a entregar los resultados para un programa genético de una escala sin precedentes", dijo Alicia Zhou, Ph.D., directora de Ciencia en Color. "Durante mucho tiempo, la comunidad de la investigación científica ha reclutado participantes para participar en estudios genómicos de gran escala sin entregarles ningún resultado. Con <em>All of Us</em>, hemos proporcionado las herramientas para hacer justamente eso, de una manera conveniente y accesible. Ahora tenemos una verdadera oportunidad para ofrecer valor a los participantes".</p>
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<p><em>All of Us</em> entregará los resultados genéticos de manera gradual y proporcionará más resultados con el paso de tiempo. En un año aproximadamente, el programa planea ofrecer a los participantes la opción de recibir información acerca de cómo su ADN puede afectar la manera en la que su cuerpo responde a ciertos medicamentos (farmacogenética), y acerca de las variantes genéticas asociadas con el riesgo elevado de padecer ciertas enfermedades, a partir de directrices del American College of Medical Genetics and Genomics. Los participantes recibirán información a medida que sus muestras de ADN son procesadas, así que no todos recibirán información inmediatamente.</p>
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<p>Desde que <em>All of Us</em> comenzó sus inscripciones nacionales en 2018, más de 270,000 personas han proporcionado muestras biológicas y más del 80 por ciento de ellas proviene de comunidades que históricamente han estado poco representadas en la investigación biomédica. Estas incluyen minorías raciales y étnicas, minorías sexuales y de género, y otros grupos.</p>
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<p>"Necesitamos programas como <em>All of Us</em> para construir bases de datos diversas para que los resultados de las investigaciones científicas beneficien a todos", dijo Brad Ozenberger, Ph.D., director de Genómica de <em>All of Us</em>. "Demasiados grupos han sido excluidos de la investigación científica en el pasado. Mucho de lo que hacemos está basado en personas de ascendencia europea por lo que gran parte de lo que sabemos sobre genómica se basa principalmente en personas de ascendencia europea. Y a menudo, los datos genómicos se exploran sin tomar en cuenta elementos críticos como el medio ambiente, la economía y otros determinantes sociales de la salud. Estamos tratando de ayudar a cambiar eso, permitiendo que toda la comunidad de investigación científica ayude a llenar estos vacíos de conocimiento".</p>
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<p><em>All of Us</em> planea poner los datos genéticos a disposición de los investigadores en aproximadamente un año, con estrictas salvaguardas de privacidad y seguridad para proteger la información de los participantes. El programa busca involucrar a investigadores de procedencias diversas para que realicen una amplia gama de estudios y aprendan más sobre cómo adaptar la atención médica a las diferentes necesidades de las personas.</p>
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<p>Para conocer más acerca de <em>All of Us</em> y participar, visite <a href="http://joinallofus.org/es">JoinAllofUs.org/es</a>.</p>
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<p>###</p>
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<p><strong>Acerca del Programa Científico <em>All of Us</em></strong>: la misión del Programa Científico <em>All of Us</em> es acelerar la investigación y los descubrimientos médicos, y facilitar la prevención, los tratamientos y los cuidados individualizados para todos nosotros. El programa colaborará con un millón o más de personas de todas partes de los Estados Unidos para construir una de las bases de datos biomédicas más diversas de su tipo y así ayudar a los investigadores científicos a alcanzar una mejor comprensión de los factores biológicos, ambientales y de comportamiento que afectan la salud. Para obtener más información, visite <a href="https://www.joinallofus.org/es">www.JoinAllofUs.org/es</a> y <a href="http://www.allofus.nih.gov/">www.allofus.nih.gov</a> (en inglés).</p>
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<p><strong>Acerca de los Institutos Nacionales de la Salud (NIH, por sus siglas en inglés)</strong>: los Institutos Nacionales de la Salud son la principal agencia de investigación médica del país. Se compone de 27 institutos y centros, y pertenece al Departamento de Salud y Servicios Humanos de los Estados Unidos. Los NIH son la principal agencia federal primaria que realiza y apoya investigación médica básica, clínica y traslacional, y está investigando las causas, los tratamientos y las curas de enfermedades comunes y poco comunes. Para obtener más información sobre los NIH y sus programas, visite: <a href="https://salud.nih.gov">https://salud.nih.gov</a>.</p>
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