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

被引:6
作者
Penchaszadeh V.B. [1 ]
机构
[1] Universidad Nacional de La Matanza, Florencio Varela 1903, San Justo
关键词
Argentina; Bioethics and genetics; Equity; Genetic services; Latin America; Public health;
D O I
10.1007/s12687-015-0217-5
中图分类号
学科分类号
摘要
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. Health-care 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. © 2015, Springer-Verlag Berlin Heidelberg.
引用
收藏
页码:223 / 230
页数:7
相关论文
共 24 条
[1]  
Barreiro C.Z., Bidondo M.P., Garrido J.A., Deurloo J., Et al., Chaco outreach project: the development of a primary health care-based medical genetic service in an Argentinean province, J Community Genet, 4, pp. 321-334, (2013)
[2]  
Campana H., Pawluk M.S., Lopez Camelo J.S., ECLAMC Study Group: birth prevalence of 27 selected congenital anomalies in 7 geographic regions of Argentina, Arch Argent Pediatr, 108, pp. 409-417, (2010)
[3]  
Casado M., Luna F., Cuestiones de Bioética en y desde Latinoamérica, (2012)
[4]  
Castilla E.E., Adams J., Genealogical information and the structure of rural Latin-American populations: reality and fantasy, Hum Hered, 46, pp. 241-255, (1996)
[5]  
Castilla E.E., Orioli I.M., ECLAMC: the Latin-American collaborative study of congenital malformations, Community Genet, 7, pp. 76-94, (2004)
[6]  
Dodelson de Kremer R., Depetris de Boldini C., Paschini de Capra A., Pons de Veritier P., Goldenhersch H., Corbella L., Sembaj A., Martin S., Kremer I., Mass L., Et al., Estimation of heterozygote frequency of Sandhoff disease in a high-risk Argentinian population. Predictive assignment of the genotype through statistical analysis, Medicina (Buenos Aires), 47, pp. 455-463, (1987)
[7]  
Feliu-Torres A., Bonduel M., Schiuccati G., del Pozo A., Et al., Beta talasemia en la Argentina, Medicina, 62, pp. 124-134, (2002)
[8]  
Garrafa V., Kottow M., Saada A., Estatuto epistemológico de la bioética (Epistemologic Statute of Bioethics), (2005)
[9]  
Groisman B., Bidondo M.P., Gili J.A., Barbero P., Liascovich R., Strategies to achieve sustainability and quality in birth defects registries: the experience of the National Registry of Congenital Anomalies of Argentina, J Registry Manag, 40, pp. 29-31, (2013)
[10]  
Lantigua-Cruz A., An overview of genetic counseling in Cuba, J Genet Couns, 22, pp. 849-853, (2013)