Direct-to-consumer genetic testing: Free will or infringement of autonomy?

dc.creatorBeltran Casas, Orietta Ivonne
dc.date2024-12-20
dc.date.accessioned2025-08-22T21:28:39Z
dc.date.available2025-08-22T21:28:39Z
dc.descriptionPurpose/Context. There are currently several types of direct-to-consumer genetic tests, some to assess health and non-health aspects, which generate controversy with respect to the exercise of autonomy. Methodology/Approach. A literature review with a narrative approach was conducted on the information declared by direct online sales companies, the validity and clinical utility of direct-to-consumer genetic tests in humans, from the elements of respect for the autonomy of principled bioethics. Results/Findings. Of 48 documents selected, the topics were distributed as follows: 29% on direct-to-consumer genetic tests related to health, 15% on tests not related to health aspects, 15% corresponded to information provided to the public by companies, 27% on validity and clinical utility, and 40% dealt with respect for autonomy and legal aspects. Discussion/Conclusions/Contributions. From the perspective of the principled autonomous notion conception, when an individual accesses direct-to-consumer genetic testing, even intentionally, but which is promoted with misleading information/advertising, without pre- and post-results genetic counseling, and in which analytical/clinical validity is insufficient, the level of understanding and freedom of choice for decision making is affected, therefore, acting is not fully autonomous.en-US
dc.descriptionPropósito/Contexto. En la actualidad existen varios tipos de pruebas genéticas directas al consumidor, algunas para evaluar aspectos relacionados o no con la salud, las cuales generan controversias con respecto al ejercicio de la autonomía. Metodología/Enfoque. Se realizó una revisión de la literatura de enfoque narrativo sobre la información declarada por las empresas de venta directa en línea, la validez y la utilidad clínica de las pruebas genéticas directas al consumidor en humanos, desde los elementos del respeto a la autonomía de la bioética principialista. Resultados/Hallazgos. De 48 documentos seleccionados, las temáticas se distribuyeron así: el 29 % sobre pruebas genéticas directas al consumidor relacionadas con salud, un 15 % acerca de pruebas no relacionadas con aspectos de la salud, 15 % correspondieron a información suministrada al público por las empresas, un 27 % sobre validez y utilidad clínica, y un 40 % trataba acerca del respeto a la autonomía y aspectos legales. Discusión/Conclusiones/Contribuciones. Desde la perspectiva de la concepción de noción autónoma principialista, cuando un individuo accede a las pruebas genéticas directas al consumidor, aun de manera intencional, pero que se promocionan con información/publicidad engañosa, sin asesoramiento genético previo y posterior a los resultados, y en las cuales la validez analítica/clínica es insuficiente, se afecta el nivel de comprensión y la libertad de elegir para la toma de decisiones, por lo tanto, el actuar no es completamente autónomo.es-ES
dc.descriptionPurpose/Context. There are currently several types of direct-to-consumer genetic tests, some to assess health and non-health aspects, which generate controversy with respect to the exercise of autonomy. Methodology/Approach. A literature review with a narrative approach was conducted on the information declared by direct online sales companies, the validity and clinical utility of direct-to-consumer genetic tests in humans, from the elements of respect for the autonomy of principled bioethics. Results/Findings. Of 48 documents selected, the topics were distributed as follows: 29% on direct-to-consumer genetic tests related to health, 15% on tests not related to health aspects, 15% corresponded to information provided to the public by companies, 27% on validity and clinical utility, and 40% dealt with respect for autonomy and legal aspects. Discussion/Conclusions/Contributions. From the perspective of the principled autonomous notion conception, when an individual accesses direct-to-consumer genetic testing, even intentionally, but which is promoted with misleading information/advertising, without pre- and post-results genetic counseling, and in which analytical/clinical validity is insufficient, the level of understanding and freedom of choice for decision making is affected, therefore, acting is not fully autonomous.fr-FR
dc.descriptionObjetivo/Contexto. Atualmente, existem vários tipos de testes genéticos diretos ao consumidor, alguns para avaliar aspectos de saúde e outros não, que geram controvérsias com relação ao exercício da autonomia. Metodologia/Abordagem. Foi realizada uma revisão narrativa da literatura sobre as informações declaradas pelas empresas de vendas diretas on-line, a validade e a utilidade clínica dos testes genéticos diretos ao consumidor em seres humanos, com base nos elementos de respeito à autonomia da bioética baseada em princípios. Resultados/Descobertas. Dos 48 documentos selecionados, os tópicos foram distribuídos da seguinte forma: 29% sobre testes genéticos diretos ao consumidor relacionados à saúde, 15% sobre testes não relacionados à saúde, 15% sobre informações fornecidas ao público pelas empresas, 27% sobre validade e utilidade clínica e 40% sobre respeito à autonomia e aspectos legais. Discussão/Conclusões/Contribuições. Do ponto de vista da noção principiológica de autonomia, quando um indivíduo acessa testes genéticos diretos ao consumidor, mesmo que intencionalmente, mas que são promovidos com informações/publicidade enganosas, sem aconselhamento genético pré e pós-resultados, e nos quais a validade analítica/clínica é insuficiente, o nível de compreensão e a liberdade de escolha para a tomada de decisões são afetados, portanto, a ação não é totalmente autônoma.pt-BR
dc.formatapplication/pdf
dc.identifierhttps://revistas.unbosque.edu.co/index.php/RCB/article/view/4347
dc.identifier10.18270/rcb.4347
dc.identifier.urihttps://hdl.handle.net/20.500.12495/17523
dc.languagespa
dc.publisherUniversidad El Bosquees-ES
dc.relationhttps://revistas.unbosque.edu.co/index.php/RCB/article/view/4347/3744
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dc.rightsDerechos de autor 2024 Revista Colombiana de Bioéticaes-ES
dc.rightshttp://creativecommons.org/licenses/by-nc-nd/4.0es-ES
dc.sourceRevista Colombiana de Bioética; Vol. 19 No. 2 (2024): Continuous publicationen-US
dc.sourceRevista Colombiana de Bioética; Vol. 19 Núm. 2 (2024): Publicación continuaes-ES
dc.source2590-9452
dc.source1900-6896
dc.subjectConsentimiento Informadoes-ES
dc.subjectAsesoramiento genéticoes-ES
dc.subjectAutonomíaes-ES
dc.subjectutilitarismoes-ES
dc.subjecttest directos al consumidores-ES
dc.subjectdirect-to-consumer genetic testingen-US
dc.subjectautonomyen-US
dc.subjectinformed consenten-US
dc.subjectgenetic counselingen-US
dc.subjectdecision makingen-US
dc.subjectbioethicsen-US
dc.subjectteste genético direto ao consumidorpt-BR
dc.subjectautonomiapt-BR
dc.subjectconsentimento informadopt-BR
dc.subjectaconselhamento genéticopt-BR
dc.subjecttomada de decisãopt-BR
dc.subjectbioéticapt-BR
dc.titleDirect-to-consumer genetic testing: Free will or infringement of autonomy?en-US
dc.titlePruebas genéticas directas al consumidor: ¿libre albedrío o vulneración a la autonomía?es-ES
dc.titleDirect-to-consumer genetic testing: Free will or infringement of autonomy?fr-FR
dc.titleTestes genéticos diretos ao consumidor: livre arbítrio ou violação da autonomia?pt-BR
dc.typeinfo:eu-repo/semantics/article
dc.typeinfo:eu-repo/semantics/publishedVersion

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