Genetic testing to restore the human right to identity in post-dictatorship Argentina: Ethical, legal, and social issues.

The last military dictatorship in Argentina (1976-1983), committed egregious violations of human rights, including torture assassinations and disappearance of 30,000 political dissidents as well as friends and relatives. This included hundreds of pregnant women who were kept in clandestine detention centers and killed after delivering their babies in abject conditions. The succeeding democratic governments applied forensic genetics at the Banco Nacional de Datos Genéticos to identify the estimated 500 children stolen at birth and being reared by military families with suppression of their identity.

[Reflections of a geneticist on the influence of genes in psychiatric disorders].

The nature and causes of psychiatric disorders are controversial and subject to debate, with theories changing according to historical, scientific, political, social and cultural contexts. In the past, hereditarian hypotheses stumbled in front of the lack of knowledge of genetics, the complexity of genetic-environmental interactions and the controversies of phenotypic definitions, still unresolved. The burst of genomics gave hopes to those who believe that the causes of psychiatric disorders is in the genes and who, armed with DNA sequencers and bioinformatics, began comparing genomic sequences among patients and controls, looking for associations with diverse phenotypes which remain inadequately defined.

Reprint of "Ethical issues with artificial nutrition of children with degenerative brain diseases".

This report highlights viewpoints of the authors and comments from the auditory at a workshop, held during the 14th international Congress on neuronal ceroid lipofuscinoses (NCL) in Córdoba, Argentina, on ethical aspects of artificial nutrition in children with degenerative brain diseases. The discussion centers on what constitutes the best interest of a patient whose personality was immature before the onset of the disease, who has become demented during its course and is unable to communicate his/her own positions and desires. There is wide consensus that in a child with advanced disease who cannot be fed naturally, decisions to withhold nutrition or to institute or stop artificial nutrition, should only be made by parents (or their representatives) who are adequately prepared on an intellectual and emotional level.

Ethical issues with artificial nutrition of children with degenerative brain diseases.

This report highlights viewpoints of the authors and comments from the auditory at a workshop, held during the 14th international Congress on neuronal ceroid lipofuscinoses (NCL) in Córdoba, Argentina, on ethical aspects of artificial nutrition in children with degenerative brain diseases. The discussion centers on what constitutes the best interest of a patient whose personality was immature before the onset of the disease, who has become demented during its course and is unable to communicate his/her own positions and desires. There is wide consensus that in a child with advanced disease who cannot be fed naturally, decisions to withhold nutrition or to institute or stop artificial nutrition, should only be made by parents (or their representatives) who are adequately prepared on an intellectual and emotional level.

Ethical, legal and social issues in restoring genetic identity after forced disappearance and suppression of identity in Argentina.

Human genetic identification has been increasingly associated with the preservation, defence and reparation of human rights, in particular the right to genetic identity. The Argentinian military dictatorship of 1976-1983 engaged in a savage repression and egregious violations of human rights, including forced disappearance, torture, assassination and appropriation of children of the disappeared with suppression of their identity. The ethical, legal and social nuances in the use of forensic genetics to support the right to identity in Argentina included issues such as the best interest of children being raised by criminals, the right to learn the truth of one's origin and identity, rights of their biological families, the issue of voluntary versus compulsory testing of victims, as well as the duty of the state to investigate crimes against humanity, punish perpetrators and provide justice and reparation to the victims.

Ethical issues in genetics and public health in Latin America with a focus on Argentina.

This paper reviews the health situation and developments in medical genetics and bioethics in Latin America, with a focus on Argentina. The region is the most inequitable in the world, with an average Gini Index of 52.5 and 25 % of the population living in poverty.

A tribute to josé maría ("chema") cantú.

José María ("Chema") Cantú (1938-2007), born in Mexico, was a pioneering, loved and respected leader in medical and human genetics and bioethics in Latin America. He graduated as a physician in Mexico and then trained in medical and human genetics in France and the United States. He was instrumental in developing a first-rate research, training and genetic services program in medical and human genetics in Guadalajara, in northwestern Mexico.

Genetics and human rights. Two histories: Restoring genetic identity after forced disappearance and identity suppression in Argentina and after compulsory isolation for leprosy in Brazil.

Over the past three decades, there has been an accelerated development of genetic technology, leading to its use in human genetic identification for many purposes. Additionally, it has been made explicit that identity is a fundamental human right. A number of historical circumstances have connected these developments.

Genetic testing and services in Argentina.

Argentina is a middle-income country with a population of 40 million people. The structure of morbidity and mortality approaches that of more developed nations, with congenital and genetic disorders contributing significantly to ill health. The health delivery system is mixed, with public, social security, and private sectors which together spend close to 10 % of the GNP.

Community genetics. Its definition 2010.

This paper presents a definition of the medical field of community genetics. It starts with a brief historical overview, defines the requirements for an adequate definition, presents the definition, and discusses the constituent parts of the definition.

Argentina: public health genomics.

Argentina's population numbers about 40 million, with main genetic contributions from Europeans, Amerindians and, to a much lower extent, West Africans. There is a traditional health care system publicly funded coexisting with a social security system and a for-profit private sector. Clinical genetic services include about 40 units in public hospitals dealing mainly with pediatric genetics.

Community genetic services in Latin America and regional network of medical genetics. Recommendations of a World Health Organization consultation.

The World Health Organization sponsored a Consultation on Community Genetic Services and a Regional Network of Medical Genetics in Latin America in Porto Alegre, Brazil, on June 19, 2003. The main recommendations of the meeting included: (a) the call for government funding of services, research and education in medical genetics; (b) the conduct of epidemiological research on the prevalence and types of birth defects, genetic disorders and genetic predispositions to common diseases; (c) the education of health professionals in genetics; (d) the education of genetic professionals in community health and public health genetics; (e) the fostering of interactions between clinical geneticists, public health personnel, primary health care workers and community organizations, and (f) a better planning of regionalized services to avoid duplication and inefficiency.

Genetic services in Latin America.

This special issue of Community Genetics reviews some of the most important developments in medical genetics in key countries of Latin America. Contributions to this issue were prepared for a special consultation of the World Health Organization held in Porto Alegre, Brazil, on June 19, 2003. Latin America is a region of medium- to low-income countries characterized by socioeconomic problems, with large segments of the population living in poverty and extreme disparities in the distribution of wealth.

Genetic services to the latino population in the United States.

In 1998 Latinos (Hispanics) in the United States number 30 million persons and account for 11.3% of the total population, while it is predicted that by the year 2020 they will become the largest minority. This article describes the demographics and health profile of the Latino population in the United States.

Preventing congenital anomalies in developing countries.

The birth prevalence of congenital anomalies in developing countries is similar to that observed in developed countries. However, the health impact of birth defects is higher because of a lack of adequate services for the care of affected infants and a higher rate of exposures to infections and malnutrition. A number of successful measures for the prevention of congenital anomalies are being taken in a number of developing nations.

Genetic counseling issues in Latinos.

Close to 12% (33 million) of the U.S. population is of Latino ethnocultural background, and it is estimated by the year 2005 they will become the largest ethnic minority.

Informed consent for population-based research involving genetics.

Bridging the gap between gene discovery and our ability to use genetic information to benefit health requires population-based knowledge about the contribution of common gene variants and gene-environment interactions to the risk of disease. The risks and benefits associated with population-based research involving genetics, especially lower-penetrance gene variants, can differ in nature from those associated with family-based research. In response to the urgent need for appropriate guidelines, the Centers for Disease Control and Prevention formed a multidisciplinary group to develop an informed consent approach for integrating genetic variation into population-based research.

Genetic identification of children of the disappeared in Argentina.

During the military dictatorship that ruled Argentina between 1976 and 1983, the security forces engaged in well-planned repression that included the abduction, torture, and disappearance of thousands of dissidents. Repression spared neither children nor pregnant women. Approximately 220 babies and children of the disappeared victims were abducted and kept mostly by families with connections with the military.