"Filosofía para la nueva genética..."
Ernesto Schwartz Marín. Mphil in Genomics in Society ESRC- Centre for Genomics in Society Exeter University, United Kingdom Byrne House St. Germans Road Exeter, UK EX4 4PJ; email@example.com www.genomicsnetwork.ac.uk/egenis
Abstract-The creation of The National Institute of Genomic Medicine (INMEGEN) has been accompanied by the conception of genomicsovereignty in Mexico; this relation is key to understanding the socio-legal design of population genomics and the political framing of this new technology in the public sphere. In the last four years the coupling of an incipient bioethical framework and the production of the Mexican Hap Map has converged in a modification to the General Law of Health, in order to protect the so called “genomicsovereignty”. Even though the discursive links between national security, the uniqueness of Mexican Mestizo/ Indigenous population and the promise to improve health care in the country, became the unquestionable platform for the new socio-technical project; the very conception of genomic sovereignty is by no means unproblematic.
Keywords: Genomic Sovereignty, Mexico, INMEGEN, Bioethics, PopulationGenomics.
Protecting Genomic Sovereignty: Insights from ethnography and political philosophy
Based on the premise that a nuanced understanding of the genomic structure of populations could bring exponential health benefits to Mexicans, the National Institute of Genomic Medicine (INMEGEN) was created in July 2004. Mexican congress mandated this new organization with the official duties to “promote,regulate, foster and practice the research and medical applications derived from the knowledge of the human genome (Gaceta Parlamentaria, Article V-bis, 24 of April 2004).” It was not a minor political deed that the clearance for one of such projects became possible in a developing country, at a national scale and with an unusual budget of 120 million dollars (plus private donations). According toresearchers at the Mc Laughlin Rotman Centre in Canada (Seguin et.al 2008) and my own research (Schwartz-Marin 2008), the creation of the eleventh decentralised institute of Health in Mexico, came hand in hand with the notion of “Genomic Sovereignty”.
The first documental appearance of sovereignty, in its molecular fashion, is to be found in the legislative exposition of motives in the law toregulate the human genome (Gaceta Parlamentaria 2001). In 2001-2002 when the ideas to create a National Organism to regulate the knowledge produced by the Human Genome Project were circulating inside the Congress, the notion of a new type of sovereignty was introduced as well. More than 17 years had passed without any major investment in Science and Technology in the country, and the creation ofthe INMEGEN was trumpeted as the coming of age. Julio Frenk-Mora – former Secretary of Health (2000-2006) and political sponsor of the project, celebrated its creation as one of the most fundamental decisions for the future health of Mexico,
and its bioethical independence in the emerging knowledge economies: “With the creation of the National Institute of Genomic Medicine, Mexico will fullyenter into the 21st century participating with a vigorous and sovereign voice in science, and never with a weak and dependent echo (emphasis added Frenk-Mora 2004).”
Along with the political agenda to place Mexico among the few countries producing a national bio-economical infrastructure (OECD 2007; WHO 2002), intended to reduce the gaps between developing and developed nations (INMEGEN´S workprogramme 2005), came a specific notion of populations understood in genomic terms. The exposition of motives that came as a preface of the law, that officially created the INMEGEN (Gaceta Parlamentaria, April 2004), was full of deterministic and simplistic mechanic visions of genomics, that in a not distant future would contribute to enormous cuts in healthcare:
As a consequence of knowing how...
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