Impacto de la ausencia del Consejo Nacional de Bioética Colombiano

Martínez, Gabriela Rueda; Sá, Natan Monsores de

doi:10.18359/rlbi.542

Cited by 5 publications

(1 citation statement)

References 3 publications

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“…In the case of Colombia, for a long time the evaluation of scientific research lacked the requirement of an ethical perspective (Resolution 8430/93); therefore, the formation of the Consejo Nacional de Bioética in Colombia was established until 2010 (Law 1374/2010). 21 At the end of 2019, the Minimum guidelines for the formation and operation of research ethics committees in Colombia (CNB) were published; besides the international guidelines, these take into account regulations from other countries, such as those published in Mexico in 2018 by Conbioetica. Nevertheless, according to these new guidelines for RECs in Colombia, membership in a REC is only for two years -instead of the three years that Conbioetica requires.…”

Section: Rec Compositionmentioning

confidence: 99%

Operation of research ethics committees in Colombia, Costa Rica, Guatemala, and Mexico: Mesoamerican Project

et al. 2021

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Objective. To attain a better understanding of the structure and processes of Research Ethics Committees (REC) in the low-and middle-income countries of the Mesoamerican region. The objectives are knowing the operational practices of the RECs regarding project evaluation, training needs, and infrastructure. Materials and methods. The REC training and needs assessment involved an online survey of all the RECs (n=55) identified in Colombia (n=11), Costa Rica (n=5), Guatemala (n=5), and Mexico (n=34). Results. Participants reported inadequate infrastructure for its proper operation (only 49.1 %, or 27/55, have an exclusive office to safeguard files); insufficient administrative staff (47.3%, 26/55), or financial resources to conduct active site monitoring (85.6%, 47/55) toensure the protection of rights and welfare of study participants. Conclusions. Investments in REC member training and infrastructure are needed to ensure compliance of REC evaluations with the standards for ethical conduct of research.

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Section: Rec Compositionmentioning

confidence: 99%

Operation of research ethics committees in Colombia, Costa Rica, Guatemala, and Mexico: Mesoamerican Project

et al. 2021

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Beyond the clinical context: the process of losing oneself living with Huntington’s disease

Varela

Arias

Martorell-Poveda

et al. 2022

Orphanet J Rare Dis

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Background People with Huntington's disease (HD) have increased functional and cognitive dependence. While numerous clinical, genetic, and therapeutic management studies have been carried out, few studies have investigated the disease from the personal experience and the context of people living with HD. To better serve these patients, our purpose is to understand, from the perspective of the patient and their families, how people with HD cope with their daily lives outside the clinical setting. Methods Thirty-three affected or at-risk people participated in this study. Participants were interviewed at their homes on distinct occasions during a family visit. We analyzed the data using Grounded Theory, which allowed us to understand how people live with the disease on their own terms. Results Living with HD is a process that begins with acceptance or denial that one is at risk for the disease or, growing awareness of the condition due to motor, behavioral, and cognitive changes, and, finally, loss of autonomy with physical dependence on another person, and loss of sense of self and family. Conclusion While the daily life of patients before disease onset was characterized by physical and mental/cognitive independence, with HD they become increasingly trapped in their bodies, and their complications are due to the lack of effective curable therapy.

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Retos de la ética en la investigación socio jurídica: revisión a partir de buenas prácticas en artículos publicados

2017

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El presente artículo pretende proporcionar una mirada a las consideraciones y reflexiones desde la ética de la investigación enfocada a la investigación socio jurídica. La literatura en éste campo se ha ocupado de reflexionar sobre la ética de la investigación en las ciencias sociales, dentro de la que se encuentra la investigación socio jurídica. Este tipo de investigación en el campo del derecho presenta sus consideraciones teóricas propias, que aquí nos permiten encontrar una aproximación a la problemática de la definición misma de este tipo de investigación. Para efectos de presentar el análisis desde la ética de la investigación, se revisaron 10 artículos de resultado de investigación socio jurídica desde la perspectiva ética, tomando como punto de partida las consideraciones de la ética de la investigación con sujetos humanos del área de la biomedicina. En los artículos referidos se encontró que en efecto este tipo de investigaciones toman en consideración diferentes pautas éticas – no establecidas formalmente - que buscan el respeto a los derechos de los participantes, con las particularidades propias de la investigación socio jurídica que merecen ser tomadas en cuenta. El artículo concluye con algunas sugerencias desde lo práctico y lo metodológico en relación con la ética de la investigación socio- jurídica.

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Impacto de la ausencia del Consejo Nacional de Bioética Colombiano

Cited by 5 publications

References 3 publications

Operation of research ethics committees in Colombia, Costa Rica, Guatemala, and Mexico: Mesoamerican Project

Operation of research ethics committees in Colombia, Costa Rica, Guatemala, and Mexico: Mesoamerican Project

Beyond the clinical context: the process of losing oneself living with Huntington’s disease

Retos de la ética en la investigación socio jurídica: revisión a partir de buenas prácticas en artículos publicados

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