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1.
Hastings Cent Rep ; 47(4): 30-31, 2017 Jul.
Article in English | MEDLINE | ID: mdl-28749051

ABSTRACT

In this issue of the Hastings Center Report, Maya Sabatello and Paul Appelbaum explore the assumptions about community embedded in the U.S. Precision Medicine Initiative, which aims to recruit donor-partners who reflect the United States' racial and ethnic diversity. As Sabatello and Appelbaum discuss, the initiative is like other national biobanking efforts in bringing to life an imagined genetic community in need of critical attention, and given the public-private forms of partnership at the heart of the PMI, such efforts could become avenues to deepen existing inequalities rather than to alleviate them. The notion of justice has underwritten debates about genomic medicine, informed consent, citizenship, benefit sharing, and profit making since the first national biobanking project emerged at the dawn of the twenty-first century. In a paradigmatic case, the creation, by an Icelandic company, of the deCODE genomic biobank opened up fierce debates about the proper relationship between public good and private gain and became the first global example of the economic and political implications that imagined genetic communities could have in our shared future. In Mexico, in 2001, the Icelandic case fueled a policy agenda to deal with global health justice and the prospects of a future market-based colonialism predicated on the intimate knowledge of DNA.


Subject(s)
Genomics/ethics , Precision Medicine/ethics , Biological Specimen Banks , Humans , Social Justice , United States
2.
Soc Stud Sci ; 45(6): 839-61, 2015 Dec.
Article in English | MEDLINE | ID: mdl-27479999

ABSTRACT

This article explores the relationship between genetic research, nationalism and the construction of collective social identities in Latin America. It makes a comparative analysis of two research projects--the 'Genoma Mexicano' and the 'Homo Brasilis'--both of which sought to establish national and genetic profiles. Both have reproduced and strengthened the idea of their respective nations of focus, incorporating biological elements into debates on social identities. Also, both have placed the unifying figure of the mestizo/mestiço at the heart of national identity constructions, and in so doing have displaced alternative identity categories, such as those based on race. However, having been developed in different national contexts, these projects have had distinct scientific and social trajectories: in Mexico, the genomic mestizo is mobilized mainly in relation to health, while in Brazil the key arena is that of race. We show the importance of the nation as a frame for mobilizing genetic data in public policy debates, and demonstrate how race comes in and out of focus in different Latin American national contexts of genomic research, while never completely disappearing.


Subject(s)
Culture , Public Health , Public Policy , Racial Groups , Social Identification , Brazil , Genetic Research , Humans , Mexico
3.
Soc Stud Sci ; 45(6): 862-85, 2015 Dec.
Article in English | MEDLINE | ID: mdl-27480000

ABSTRACT

Abstract This article examines the role that vernacular notions of racialized-regional difference play in the constitution and stabilization of DNA populations in Colombian forensic science, in what we frame as a process of public science. In public science, the imaginations of the scientific world and common-sense public knowledge are integral to the production and circulation of science itself. We explore the origins and circulation of a scientific object--'La Tabla', published in Paredes et al. and used in genetic forensic identification procedures--among genetic research institutes, forensic genetics laboratories and courtrooms in Bogotá. We unveil the double life of this central object of forensic genetics. On the one hand, La Tabla enjoys an indisputable public place in the processing of forensic genetic evidence in Colombia (paternity cases, identification of bodies, etc.). On the other hand, the relations it establishes between 'race', geography and genetics are questioned among population geneticists in Colombia. Although forensic technicians are aware of the disputes among population geneticists, they use and endorse the relations established between genetics, 'race' and geography because these fit with common-sense notions of visible bodily difference and the regionalization of race in the Colombian nation.


Subject(s)
Forensic Genetics , Colombia , DNA/analysis , Forensic Genetics/history , Forensic Genetics/legislation & jurisprudence , Forensic Genetics/standards , Genetic Research , History, 20th Century , History, 21st Century , Humans , Racial Groups
4.
Soc Stud Sci ; 45(6): 886-906, 2015 Dec.
Article in English | MEDLINE | ID: mdl-27480001

ABSTRACT

Using data from focus groups conducted in Colombia, we explore how educated lay audiences faced with scenarios about ancestry and genetics draw on widespread and dominant notions of nation, race and belonging in Colombia to ascribe ancestry to collectivities and to themselves as individuals. People from a life sciences background tend to deploy idioms of race and genetics more readily than people from a humanities and race-critical background. When they considered individuals, people tempered or domesticated the more mechanistic explanations about racialized physical appearance, ancestry and genetics that were apparent at the collective level. Ideas of the latency and manifestation of invisible traits were an aspect of this domestication. People ceded ultimate authority to genetic science, but deployed it to work alongside what they already knew. Notions of genetic essentialism co-exist with the strategic use of genetic ancestry in ways that both fix and unfix race. Our data indicate the importance of attending to the different epistemological stances through which people define authoritative knowledge and to the importance of distinguishing the scale of resolution at which the question of diversity is being posed.


Subject(s)
Attitude , Genetics, Population , Physical Appearance, Body , Racial Groups/psychology , Colombia , Focus Groups , Humans
5.
Med Law ; 31(2): 283-94, 2012 Jun.
Article in English | MEDLINE | ID: mdl-22900414

ABSTRACT

We present a socio-legal analysis of the policy agenda known as genomic sovereignty in Mexico--in which the notion was first coined--and its translation into a national law of health aimed at regulating population genomics research in the country. Based in more than 2 years of participant observation we sustain that the notion of genomic sovereignty, aimed at protecting the "unique" genetic patterns of populations needs to be critically reassessed. The main problem with such notion is that there are no scientifically sound ways to delimit the genetic "uniqueness" of any population in the world. Arising from this dilemma it becomes increasingly clear that the patrimonial doctrines that have been used to regulate population genomics in Mexico are inoperative, and rather than creating a legal environment in which medical genomics can become a national public good, it has created a law that has been used to monopolise human genomic research in the country; making blood samples and data tool for dispute amongst scientific elites.


Subject(s)
Genetic Research/legislation & jurisprudence , Genomics , Genome, Human/genetics , Government Regulation , Humans , Mexico
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