Genomic sovereignty or the enemy within

Abstract

Genomic sovereignty is a concept that has become very popular among developing countries such as India, China, South Africa and Mexico. This concept is a response to developed countries that have taken advantage of those countries and researchers who don't have the means for protecting their own biogenetic resources. In this article we argue that genomic sovereignty is not about the "others" extracting and exploiting local "human genetic resources", but developing and implementing the ethical, legal and administrative tools, based on transparency, openness and equal access to biological material, in order to build up a robust research networks. Being biological samples a scarce and valuable good, we conclude that controlling the access to this resource by means of the law, without a well implemented biobanking system and a clear scientific policy may lead to a situation where asymmetric relations are generated among research groups of the very same developing country. We would advice to those countries pretending to protect their biological samples and data from the outside, before developing laws against possible "intrusions", they need to design strategies to promote equal and fair access to both resources paramount to biomedical research.Key words: genomic sovereignty, Mexico, law, research communities, developing countries, biological samples, cultural values, biobanks ethics Soberanía genómica o el enemigo interiorResumen: "Soberanía genómica" es un concepto que se ha hecho muy popular entre los países en desarrollo, como India, China, Sudáfrica y México. Este concepto es una respuesta a los países desarrollados que han tomado ventaja, aprovechándose de aquellos países y de los investigadores que no tienen los medios para proteger sus propios recursos biogenéticos. En este artículo argumentamos que la soberanía genética no se trata de impedir que "otros" extraigan y exploten "los recursos genéticos humanos" locales, sino del desarrollo y de la aplicación de las herramientas éticas, jurídicas y administrativas basadas en la transparencia, la apertura e igualdad en el acceso al material biológico, con el fin de construir redes de investigación sólidas. Al ser las muestras biológicas un bien escaso y valioso, concluimos que el control del acceso a este recurso, por medio de la ley, sin un sistema de biobancos bien implementado y sin una política científica clara, puede llevar a una relación asimétrica entre los grupos de investigación del mismo país en desarrollo. Nos gustaría advertir a los países que pretenden proteger sus muestras biológicas y datos asociados que, antes que elaborar leyes contra posibles intrusiones, es necesario diseñar estrategias para promover el acceso justo y equitativo a los recursos primordiales para la investigación biomédica.Palabras clave: soberanía genómica, México, ley, comunidades de investigación, países en desarrollo, muestras biológicas, valores culturales, ética de biobancos Soberania genômica ou o inimigo interiorResumo: "Soberania genômica" é um conceito que se ...

Commoning genomic solidarity to improve global health equality

“… 9 In 2008, Mexico amended its General Health Act, which is also known as the Genomic Sovereignty Act. 10 It stipulates that the Mexican genome had to be primarily studied “by and for Mexicans” 11 and precludes DNA samples from being taken out of the country without Mexico being part of the project or without government approvals. Similar technonationalism 12 can be seen in discussions in Africa, 13 Brazil, 14 and India.…”

Genetic/genomic testing: defining the parameters for ethical, legal and social implications (ELSI)

“…It will undoubtedly be of interest extending this study to genetic testing of newborns and for non-medical purposes such as exploration of personal ancestry, as well as to groups of people in situations of vulnerability and with only partial capacity of consent like prisoners and mentally impaired persons. In addition, there are also criteria that become relevant in the international relations and research contexts, like "Genomic Sovereignty" [ 59 , 60 ], "Data Sharing" [ 61 , 62 ] and "International Cooperation" [ 63 , 64 ].…”

Genetic/Genomic Testing: Defining The Parameters For Ethical, Legal and Social Implications (ELSI)

“…It will undoubtedly be of interest extending this study to genetic testing of newborns and for non-medical purposes such as exploration of personal ancestry, as well as to groups of people in situations of vulnerability and with only partial capacity of consent like prisoners and mentally impaired persons. In addition, there are also criteria that become relevant in the international relations and research contexts, like "Genomic Sovereignty" [51,52], "Data Sharing" [53,54] and "International Cooperation" [55,56].…”