Medical genetic services in Latin America: report of a meeting of experts

Penchaszadeh, Víctor B.; Beiguelman, B

doi:10.1590/s1020-49891998000600013

Cited by 30 publications

(38 citation statements)

References 3 publications

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“…Except for laboratories that perform newborn screening, there are no official agencies that control or monitor the analytical validity of tests. Quality assessment of laboratory results relies mostly on the voluntary decision of the lab directors to participate in a quality control program, usually of an international agency (Penchaszadeh and Aguiar 2009).…”

Section: National Policies and Legal Frameworkmentioning

confidence: 99%

“…DNA tests are performed locally only for a handful of conditions, the remainder are sent abroad on a fee-for-service basis. While these laboratories are certified by a state agency, participation in quality assessment programs is voluntary and regulation very lax, with little government oversight (Penchaszadeh and Aguiar 2009).…”

Section: National Policies and Legal Frameworkmentioning

confidence: 99%

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Genetic testing and services in Argentina

Penchaszadeh

2012

J Community Genet

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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. Health subsectors are decentralized at provincial and municipality levels, where health planning and financing occurs, leading to fragmentation, inefficiency, and inequities. There are about 41 clinical genetic units in major medical centers in large cities, staffed by about 120 clinical geneticists, although only a few units are fully comprehensive genetic centers. Duplications, deficiencies, and poor regionalization and coordination affect health care delivery in general and in genetics. Funding for genetic services is limited due to poor understanding and lack of political will on the part of health authorities. Recently, however, there have been some interesting initiatives by national and provincial ministries of health to improve genetic services delivery by increasing coordination and regionalization. At the same time, training in genetics of health professionals is occurring, particularly in primary health care, and registries of congenital defects are being put in place. These developments are occurring in conjunction with a new awareness by health authorities of the importance of genetics in health care and research, a heightened activism of patient organizations demanding services for neglected conditions, as well as of women movements for the right to safe abortion.

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Section: National Policies and Legal Frameworkmentioning

confidence: 99%

Section: National Policies and Legal Frameworkmentioning

confidence: 99%

Genetic testing and services in Argentina

Penchaszadeh

2012

J Community Genet

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“…The provision of these services in public hospitals, university teaching hospitals and private clinics includes widespread access to prenatal diagnosis and antenatal screening (hereinafter PND) for the detection of fetal abnormalities. For example, molecular genetics is used regularly in large hospitals in Mexico for the diagnosis of common genetic conditions such as cystic fibrosis, hemophilia, and muscular dystrophy (Penchaszadeh and Beiguelman 1998). Increasing access to such services in Latin America gives rise to an unusual health policy context in which fetal abnormalities are detected but parents do not have access to safe and legal abortion should they wish to terminate an affected pregnancy.…”

Section: Introductionmentioning

confidence: 99%

Prenatal Diagnosis and Abortion for Congenital Abnormalities: Is It Ethical to Provide One Without the Other?

Ballantyne¹,

Newson

Luna³

et al. 2009

The American Journal of Bioethics

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“…Infant mortality is 11.1 per 1000, and its main causes are perinatal conditions (52 %) and congenital anomalies (27 %) (PAHO 2012). Genetic and congenital disorders have a prevalence similar to that in developed countries (Penchaszadeh and Beiguelman 1998), with variations due to founder effects and consanguineous isolates, including clusters of rare single-gene disorders, such as Sandhoff disease (Dodelson de Kremer et al 1987) and oculocutaneous albinism (Castilla and Adams 1996).…”

Section: Argentina: An Overviewmentioning

confidence: 99%

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

Penchaszadeh

2015

J Community Genet

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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. Health expenditures are low and health systems are fragmented and privatised, with curtailed governmental responsibility and regulation. Healthcare decision making is mostly in the hands of private insurance corporations and the medical-industrial complex, so that what is (or is not) covered by health plans is arbitrary and determined by the market and not by population health needs. This inequity and the lack of meaningful governmental intervention in the provision of health care, including genetic services, are at the heart of the bioethical dilemmas in Latin America. It is not surprising, therefore, that bioethics in the region has developed an approach grounded in social justice, equity and human rights as guiding principles, in contrast to the individualism espoused by Anglo-Saxon bioethics. The main ethical issues identified in genetics in Latin America are (1) inequity in access to genetic services, particularly in prenatal diagnosis, (2) genetic discrimination and (3) the lack of adherence to internationally accepted requisites of clinical validity and utility for diagnostic and predictive genetic testing. In this context, there is a risk that the impressive advances in genetics/genomics occurring in developed countries may fail to improve the public's health and deepen inequity, with the implementation of expensive genetic technologies of unproven validity.

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Medical genetic services in Latin America: report of a meeting of experts

Cited by 30 publications

References 3 publications

Genetic testing and services in Argentina

Genetic testing and services in Argentina

Prenatal Diagnosis and Abortion for Congenital Abnormalities: Is It Ethical to Provide One Without the Other?

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

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