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dc.contributor.authorLabrador Cañadas, Mª Vicenta
dc.contributor.authorPàmpols Ros, Teresa
dc.contributor.authorDulín Íñiguez, Elena
dc.contributor.authorPérez Aytés, Antonio
dc.contributor.authorGarcía Sagredo, José Miguel
dc.contributor.authorDíaz de Bustamante, Aránzazu
dc.contributor.authorMartin-Arribas, Concepcion 
dc.contributor.authorGarcia Lopez, Fernando Jose 
dc.contributor.authorNicolás Jiménez, Pilar
dc.identifier.citationRev Esp Salud Publica. 2021 Jan 26;95:e202101016.es_ES
dc.description.abstractDecision making for the development of newborn screening programs is based on not only medical but also social concerns and involves different stakeholders. Part III of the article focuses on their role in the governance of the programs. First of all, we consider the proactive role that health authorities has played in the evolution to an evidentiary model of policy development currently based on evidence, just as in the preparation of an expert, impartial and transparent opinion on health policy and its coordination with the national health system. And, in accordance with this evidence and with the consensus, health autorities following quality criteria have made an attempt to achieve a more homogeneous approach of the neonatal screening program throughout the territory. Secondly, we address the role of several scientific and professional societies in newborn screening. Among them, it deserves to be mentioned the Spanish Society for Clinical Chemistry, currently Spanish Society of Laboratory Medicine (SEQCML), and its Commission of inborn errors of metabolism and the Spanish Society for Newborn Screening (AECNE), which since 1985 and for thirty three years collected the activity of newborn screening centers and established a forum for debate, sharing of knowledge and cooperation among screening centers and with health authorities. Since 1999, the Spanish Society for Inborn Errors of Metabolism (AECOM) exercises an important activity in the field of diagnosis treatment and follow up of patients. Finally, we consider the role of families and the psychosocial aspects of the programme, and the associative activity of patient organizations. In 1990 the Spanish federation of PKU and other disorders (FAEPKU) was found, renamed currently as The Spanish Federation of Inherited Metabolic Diseases; together with the Spanish Federation for Rare Diseases (FEDER), found in 1999, they both have clearly contributed to the patient's empowerment, supporting research and education and establishing a network of cooperation and support for patients and their families. Patient organizations collaborate with health authorities but they have not participated in policy decision making yet. During this half century, the evolution of newborn screening programs have been characterized for a spirit of improvement, by including the development of ethical, legal and social issues. Important technological challenges lie ahead and it will be necessary to know how to use them efficiently, proportionally and fairly in the best interest of newborns and by extension of their family and society.es_ES
dc.publisherMinisterio de Sanidad (España) es_ES
dc.relation.isversionofPublisher's versiones_ES
dc.subjectlegal and social issues (ELSIs)es_ES
dc.subjectEvidentiary model of policy developmentes_ES
dc.subjectExtemporary modeles_ES
dc.subjectGovernance of newborn screening programses_ES
dc.subjectModels of development of newborn screening policieses_ES
dc.subjectNewborn screeninges_ES
dc.subjectNewborn screening for rare diseaseses_ES
dc.subjectPatient organizationses_ES
dc.subjectPsychosocial aspectses_ES
dc.subjectScientific and professional societieses_ES
dc.titleMedio Siglo de Cribado Neonatal en España: Evolución de los Aspectos Éticos, Legales y Sociales (Aels). Parte I, Aspectos Éticoses_ES
dc.title.alternativeHalf a century of newborn screening in Spain: Evolution of ethical, legal and social issues (ELSIs). Part III, social issueses_ES
dc.rights.licenseAtribución-NoComercial-CompartirIgual 4.0 Internacional*
dc.identifier.journalRevista espanola de salud publicaes_ES
dc.repisalud.centroISCIII::Centro Nacional de Epidemologíaes_ES
dc.repisalud.centroISCIII::Servicios Centrales

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Atribución-NoComercial-CompartirIgual 4.0 Internacional
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