Recreational genetics: direct-to-consumer genetic tests in Portugal

Detalhes bibliográficos
Autor(a) principal: Marchesini Stival, Sephora Luyza
Data de Publicação: 2020
Tipo de documento: Artigo
Idioma: por
Título da fonte: Cadernos Ibero-Americanos de Direito Sanitário (Online)
Texto Completo: https://www.cadernos.prodisa.fiocruz.br/index.php/cadernos/article/view/655
Resumo: Objective: to reflect on the use of direct-to-consumer genetic tests, especially in Portugal, which can be purchased online despite being prohibited by local legislation. Methods: a deductive method was used based on the analysis of the scientific literature in specialized journals and (inter) national legislation, with greater attention to developments in the United States, as it is the country with the largest number of companies and laboratories that commercialize direct-to-consumer genetic tests. Results: despite being prohibited by Portuguese law, anyone can buy a DNA kit online, especially from American websites, where genetic testing at affordable prices are available. Anyone can send a self-collected oral smear sample by mail, and after a brief registration on the company's website, they will receive notifications with information regarding their genetic makeup. In other countries, research on direct-to-consumer genetic testing is already exhaustive, finding several deficiencies in its practice, especially regarding informed consent and the reliability of the results, since many studies demonstrate the disparity of results for the same sample when submitted to different laboratories. In Portugal, the topic is still quite scarce, and although easily accessible, these tests are prohibited. Conclusion: it is essential to reflect on recreative genetic tests and the implications they have, not only in the life of those who undergo the test, but also of those who share the genetic material, especially in situations of direct-to-consumer genetic tests in which there is no prior counseling.
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spelling Recreational genetics: direct-to-consumer genetic tests in PortugalGenética recreativa: pruebas genéticas direct-to-consumer en PortugalGenética recreativa: os testes genéticos direct-to-consumer em PortugalPruebas genéticasMedicina de precisiónADNGenetic testingPrecision medicineDNATestes genéticosMedicina de precisãoDNAObjective: to reflect on the use of direct-to-consumer genetic tests, especially in Portugal, which can be purchased online despite being prohibited by local legislation. Methods: a deductive method was used based on the analysis of the scientific literature in specialized journals and (inter) national legislation, with greater attention to developments in the United States, as it is the country with the largest number of companies and laboratories that commercialize direct-to-consumer genetic tests. Results: despite being prohibited by Portuguese law, anyone can buy a DNA kit online, especially from American websites, where genetic testing at affordable prices are available. Anyone can send a self-collected oral smear sample by mail, and after a brief registration on the company's website, they will receive notifications with information regarding their genetic makeup. In other countries, research on direct-to-consumer genetic testing is already exhaustive, finding several deficiencies in its practice, especially regarding informed consent and the reliability of the results, since many studies demonstrate the disparity of results for the same sample when submitted to different laboratories. In Portugal, the topic is still quite scarce, and although easily accessible, these tests are prohibited. Conclusion: it is essential to reflect on recreative genetic tests and the implications they have, not only in the life of those who undergo the test, but also of those who share the genetic material, especially in situations of direct-to-consumer genetic tests in which there is no prior counseling.Objetivo: reflexionar sobre el uso de pruebas genéticas directas al consumidor, especialmente en Portugal, que a pesar de estar prohibidas por la legislación nacional, pueden adquirirse a través de Internet. Metodología: se utilizó un método deductivo basado en el análisis de la literatura científica en revistas especializadas y legislación (inter) nacional, con mayor atención a los desarrollos en Estados Unidos, por ser el país que alberga la mayor cantidad de empresas y laboratorios que comercializan derechos del consumidor de pruebas genéticas. Resultados: apesar de estar prohibido por la legislación nacional, ahora cualquiera puede solicitar un kit de ADN a través de Internet, especialmente en sitios web estadounidenses, donde es factible realizar pruebas genéticas a precios asequibles. Mediante una autocolección, mediante frotis oral, la persona envía la muestra por correo, y luego de un breve registro en el sitio web de la empresa, ahora recibirá notificaciones con información sobre su composición genética. En otros países, la investigación sobre pruebas genéticas directas al consumidor ya es exhaustiva, encontrando varias deficiencias en su práctica, especialmente en cuanto al consentimiento informado y la confiabilidad de los resultados, ya que muchos estudios demuestran la disparidad de resultados para una misma muestra cuando sometido a diferentes laboratorios. En Portugal, el tema sigue siendo bastante escaso y, aunque están prohibidas, estas pruebas son de fácil acceso. Conclusión: es fundamental reflexionar sobre el sometimiento a pruebas genéticas y las implicaciones que tienen, no solo en la vida de quienes se someten a la prueba, sino también de quienes comparten el material genético, especialmente en situaciones de pruebas genéticas directas al consumidor en las que no hay consejo prévio.Objetivo: o escopo do artigo é trazer a reflexão sobre o uso de testes genéticos direct-to-consumer, sobretudo em Portugal, que apesar da vedação pela legislação local, podem ser adquiridos pela internet. Metodologia: foi utilizado método dedutivo a partir da análise da literatura científica existente em revistas da especialidade e em legislações internacionais e portuguesa, com maior atenção aos desenvolvimentos nos Estados Unidos, por ser o país que sedia o maior número de empresas e laboratórios que comercializam testes genéticos direitos ao consumidor. Resultados: apesar de vedado pela lei nacional, qualquer pessoa consegue hoje requerer um kit DNA pela internet, sobretudo em sites americanos, em que viabilizam os testes genéticos a preços módicos. Qualquer pessoa pode remeter uma amostra feita por autocoleta de esfregaço oral pelo correio, e após um breve cadastro no site da empresa, passará a receber notificações com informações relativas a sua constituição genética. Em outros países, a pesquisa sobre testes genéticos diretos ao consumidor já é exaustiva, encontrando várias deficiências na sua prática, sobretudo quanto ao consentimento informado e à fiabilidade dos resultados, já que muitos estudos demonstram a disparidade de resultados para uma mesma amostra quando submetida a diferentes laboratórios. Em Portugal, o tema ainda é bastante escasso, e apesar de proibido, esses testes são de fácil acesso. Conclusão: é imprescindível refletirmos sobre a submissão a testes genéticos e as implicações que os mesmo têm, não só na vida de quem se submete ao teste, mas também daqueles que compartilham o material genético, sobretudo em situações de testes genéticos diretos ao consumidor em que não há prévio aconselhamento.Fundação Oswaldo Cruz Brasília2020-09-29info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfhttps://www.cadernos.prodisa.fiocruz.br/index.php/cadernos/article/view/65510.17566/ciads.v9i3.655Iberoamerican Journal of Health Law; Vol. 9 No. 3 (2020): (JUL./SEPT. 2020); 123-152Cuadernos Iberoamericanos de Derecho Sanitario; Vol. 9 Núm. 3 (2020): (JUL./SEPT. 2020); 123-152Cadernos Ibero-Americanos de Direito Sanitário; v. 9 n. 3 (2020): (JUL./SET. 2020); 123-1522358-18242317-839610.17566/ciads.v9i3reponame:Cadernos Ibero-Americanos de Direito Sanitário (Online)instname:Fundação Oswaldo Cruz (FIOCRUZ)instacron:FIOCRUZporhttps://www.cadernos.prodisa.fiocruz.br/index.php/cadernos/article/view/655/764Copyright (c) 2020 Sephora Luyza Marchesini Stivalhttps://creativecommons.org/licenses/by-nc/4.0info:eu-repo/semantics/openAccessMarchesini Stival, Sephora LuyzaMarchesini Stival, Sephora LuyzaMarchesini Stival, Sephora Luyza2020-10-07T16:46:27Zoai:ojs.cadernos.prodisa.fiocruz.br:article/655Revistahttp://www.cadernos.prodisa.fiocruz.brPUBhttp://www.cadernos.prodisa.fiocruz.br/index.php/cadernos/oaicadernos.direitosanitario@fiocruz.br2358-18242317-8396opendoar:2020-10-07T16:46:27Cadernos Ibero-Americanos de Direito Sanitário (Online) - Fundação Oswaldo Cruz (FIOCRUZ)false
dc.title.none.fl_str_mv Recreational genetics: direct-to-consumer genetic tests in Portugal
Genética recreativa: pruebas genéticas direct-to-consumer en Portugal
Genética recreativa: os testes genéticos direct-to-consumer em Portugal
title Recreational genetics: direct-to-consumer genetic tests in Portugal
spellingShingle Recreational genetics: direct-to-consumer genetic tests in Portugal
Marchesini Stival, Sephora Luyza
Pruebas genéticas
Medicina de precisión
ADN
Genetic testing
Precision medicine
DNA
Testes genéticos
Medicina de precisão
DNA
title_short Recreational genetics: direct-to-consumer genetic tests in Portugal
title_full Recreational genetics: direct-to-consumer genetic tests in Portugal
title_fullStr Recreational genetics: direct-to-consumer genetic tests in Portugal
title_full_unstemmed Recreational genetics: direct-to-consumer genetic tests in Portugal
title_sort Recreational genetics: direct-to-consumer genetic tests in Portugal
author Marchesini Stival, Sephora Luyza
author_facet Marchesini Stival, Sephora Luyza
author_role author
dc.contributor.author.fl_str_mv Marchesini Stival, Sephora Luyza
Marchesini Stival, Sephora Luyza
Marchesini Stival, Sephora Luyza
dc.subject.por.fl_str_mv Pruebas genéticas
Medicina de precisión
ADN
Genetic testing
Precision medicine
DNA
Testes genéticos
Medicina de precisão
DNA
topic Pruebas genéticas
Medicina de precisión
ADN
Genetic testing
Precision medicine
DNA
Testes genéticos
Medicina de precisão
DNA
description Objective: to reflect on the use of direct-to-consumer genetic tests, especially in Portugal, which can be purchased online despite being prohibited by local legislation. Methods: a deductive method was used based on the analysis of the scientific literature in specialized journals and (inter) national legislation, with greater attention to developments in the United States, as it is the country with the largest number of companies and laboratories that commercialize direct-to-consumer genetic tests. Results: despite being prohibited by Portuguese law, anyone can buy a DNA kit online, especially from American websites, where genetic testing at affordable prices are available. Anyone can send a self-collected oral smear sample by mail, and after a brief registration on the company's website, they will receive notifications with information regarding their genetic makeup. In other countries, research on direct-to-consumer genetic testing is already exhaustive, finding several deficiencies in its practice, especially regarding informed consent and the reliability of the results, since many studies demonstrate the disparity of results for the same sample when submitted to different laboratories. In Portugal, the topic is still quite scarce, and although easily accessible, these tests are prohibited. Conclusion: it is essential to reflect on recreative genetic tests and the implications they have, not only in the life of those who undergo the test, but also of those who share the genetic material, especially in situations of direct-to-consumer genetic tests in which there is no prior counseling.
publishDate 2020
dc.date.none.fl_str_mv 2020-09-29
dc.type.driver.fl_str_mv info:eu-repo/semantics/article
info:eu-repo/semantics/publishedVersion
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dc.identifier.uri.fl_str_mv https://www.cadernos.prodisa.fiocruz.br/index.php/cadernos/article/view/655
10.17566/ciads.v9i3.655
url https://www.cadernos.prodisa.fiocruz.br/index.php/cadernos/article/view/655
identifier_str_mv 10.17566/ciads.v9i3.655
dc.language.iso.fl_str_mv por
language por
dc.relation.none.fl_str_mv https://www.cadernos.prodisa.fiocruz.br/index.php/cadernos/article/view/655/764
dc.rights.driver.fl_str_mv Copyright (c) 2020 Sephora Luyza Marchesini Stival
https://creativecommons.org/licenses/by-nc/4.0
info:eu-repo/semantics/openAccess
rights_invalid_str_mv Copyright (c) 2020 Sephora Luyza Marchesini Stival
https://creativecommons.org/licenses/by-nc/4.0
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.publisher.none.fl_str_mv Fundação Oswaldo Cruz Brasília
publisher.none.fl_str_mv Fundação Oswaldo Cruz Brasília
dc.source.none.fl_str_mv Iberoamerican Journal of Health Law; Vol. 9 No. 3 (2020): (JUL./SEPT. 2020); 123-152
Cuadernos Iberoamericanos de Derecho Sanitario; Vol. 9 Núm. 3 (2020): (JUL./SEPT. 2020); 123-152
Cadernos Ibero-Americanos de Direito Sanitário; v. 9 n. 3 (2020): (JUL./SET. 2020); 123-152
2358-1824
2317-8396
10.17566/ciads.v9i3
reponame:Cadernos Ibero-Americanos de Direito Sanitário (Online)
instname:Fundação Oswaldo Cruz (FIOCRUZ)
instacron:FIOCRUZ
instname_str Fundação Oswaldo Cruz (FIOCRUZ)
instacron_str FIOCRUZ
institution FIOCRUZ
reponame_str Cadernos Ibero-Americanos de Direito Sanitário (Online)
collection Cadernos Ibero-Americanos de Direito Sanitário (Online)
repository.name.fl_str_mv Cadernos Ibero-Americanos de Direito Sanitário (Online) - Fundação Oswaldo Cruz (FIOCRUZ)
repository.mail.fl_str_mv cadernos.direitosanitario@fiocruz.br
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