Recreational genetics: direct-to-consumer genetic tests in Portugal
Autor(a) principal: | |
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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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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 |
format |
article |
status_str |
publishedVersion |
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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1798942495637241856 |