Bioethical issues of neonatal screening: guidelines for its comprehensive regulation

Consideraciones bioéticas del tamizaje neonatal: pautas para su regulación integral;
As considerações bioéticas da triagem neonatal: orientações para a seu regulamentação integral

dc.creatorCifuentes, Ricardo
dc.date2015-12-15
dc.date.accessioned2022-12-15T18:25:26Z
dc.date.available2022-12-15T18:25:26Z
dc.identifierhttps://revistas.unimilitar.edu.co/index.php/rlbi/article/view/1445
dc.identifier10.18359/rlbi.1445
dc.identifier.urihttps://repositorioslatinoamericanos.uchile.cl/handle/2250/5357114
dc.descriptionThe neonatal screening aims to detect anomalies at birth that are susceptible to treatment before the onset of disease. Its goal: to prevent disability and even death of some newborns. With technological developments, the benefits have extended to the family and society. Conversely, it has also been documented damages such as psychological, social and even physical harms. The probability of damage is influenced by issues associated with bioethical principles such as confidentiality, which is related to the principles of Dignity and Autonomy. Controversies such as the retention time of samples then appear. Similarly, there are other controversies associated with bioethical issues such as the priority of the person or consent. Despite the described panorama, the legislation does not address the bioethical issues comprehensively. Colombia is not an exception; specific regulation for neonatal screening does not consider, even in isolation, fundamental issues in this topic. In this context, the soft-law gives directives as the duty to ensure access to or the circumstances in which it is possible to perform neonatal screening without direct benefit to the neonate. However, it does not address other issues such as consent and confidentiality thus deserving a comprehensive bioethical debateen-US
dc.descriptionEl tamizaje neonatal pretende detectar al nacimiento anomalías susceptibles de tratamiento antes de la aparición de enfermedad. Su objetivo es evitar discapacidad e incluso la muerte de algunos recién nacidos. Con los desarrollos tecnológicos los beneficios se han extendido a la familia y a la sociedad. Contrariamente, también se han documentado daños psicológicos, sociales e incluso físicos. La probabilidad de daño está influenciada por consideraciones asociadas con principios bioéticos como la confidencialidad, la cual se  relaciona con los principios de dignidad y autonomía. Aparecen entonces controversias como el tiempo de retención de muestras. De forma similar, hay otras controversias asociadas a consideraciones bioéticas como la prioridad de la persona o el consentimiento. A pesar del panorama descrito, la legislación no aborda de forma integral las consideraciones bioéticas. Colombia no es la excepción; la normatividad específica para tamizaje neonatal no considera ni siquiera de forma aislada consideraciones fundamentales en este tópico. En este contexto, el derecho blando da directivas como el deber de garantizar el acceso o las circunstancias en las cuales es posible realizar el tamizaje neonatal sin beneficio directo para el neonato. Sin embargo, no aborda otras consideraciones como el consentimiento y la confidencialidad, lo que amerita un debate bioético integral.es-ES
dc.descriptionA triagem neonatal visa detectar ao nascimento anomalias suscetíveis de tratamento antes do aparecimento da doença. O seu objetivo é prevenir a incapacidade e até mesmo a morte de alguns recém-nascidos. Com os desenvolvimentos tecnológicos os benefícios para a família foram estendidos e também para a sociedade. Contrariamente, também têm sido documentados danos psicológicos, sociais e até mesmo danos físicos. A probabilidade de dano é influenciada por considerações associadas com princípios bioéticos, tais como a confidencialidade, que se relaciona com os princípios da dignidade e autonomia. Aparecem então controvérsias, como o tempo de retenção de amostras. Da mesma forma, há outras controvérsias associadas a considerações bioéticas como a prioridade da pessoa ou do consentimento. Apesar da situação descrita, a legislação não aborda de forma abrangente as considerações bioéticas. Colômbia não é uma exceção; a normatividade específica para a triagem neonatal não considera nem sequer de forma isolada considerações fundamentais sobre este tema. É neste contexto, que o direito macio dá diretivas como o dever de garantir o acesso ou as circunstâncias nas quais é possível realizar a triagem neonatal sem nenhum beneficio direto para o recém-nascido. No entanto, ele não aborda outras considerações, como o consentimento e a confidencialidade, o que o leva a merecer um debate bioético abrangente.pt-BR
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dc.languagespa
dc.publisherUniversidad Militar Nueva Granadaes-ES
dc.relationhttps://revistas.unimilitar.edu.co/index.php/rlbi/article/view/1445/1223
dc.relationhttps://revistas.unimilitar.edu.co/index.php/rlbi/article/view/1445/1469
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dc.rightsDerechos de autor 2016 Revista Latinoamericana de Bioéticaes-ES
dc.rightshttps://creativecommons.org/licenses/by-nc-nd/4.0es-ES
dc.sourceRevista Latinoamericana de Bioética; Vol. 16 Núm. 30-1 (2016): Bioética: por un diálogo inter y transdicisplinar; 154-173es-ES
dc.source2462-859X
dc.source1657-4702
dc.subjectNeonatal Screeningen-US
dc.subjectBioethicsen-US
dc.subjectGenetic Testingen-US
dc.subjectLegislation as a topicen-US
dc.subjectTamizaje neonatales-ES
dc.subjectbioéticaes-ES
dc.subjectpruebas genéticases-ES
dc.subjectlegislación como asuntoes-ES
dc.subjecttriagem neonatalpt-BR
dc.subjectbioéticapt-BR
dc.subjectprobas genéticaspt-BR
dc.subjectlegislação como assunto.pt-BR
dc.titleBioethical issues of neonatal screening: guidelines for its comprehensive regulationen-US
dc.titleConsideraciones bioéticas del tamizaje neonatal: pautas para su regulación integrales-ES
dc.titleAs considerações bioéticas da triagem neonatal: orientações para a seu regulamentação integralpt-BR
dc.typeinfo:eu-repo/semantics/article
dc.typeinfo:eu-repo/semantics/publishedVersion


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