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Revista Latinoamericana de Bioética

versão impressa ISSN 1657-4702

Resumo

CIFUENTES, Ricardo A.. BIOETHICAL ISSUES OF NEONATAL SCREENING: GUIDELINES FOR ITS COMPREHENSIVE REGULATION. rev.latinoam.bioet. [online]. 2016, vol.16, n.1, pp.154-173. ISSN 1657-4702.  https://doi.org/10.18359/rlbi.1445.

The 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 debate.

Palavras-chave : Neonatal Screening; Bioethics; Genetic Testing; Legislation as a topic.

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