1. Inicio
  2. Publicaciones
  3. Medio siglo de cribado neonatal en España: evolución de los aspectos éticos, legales y sociales (AELS). Parte III, aspectos sociales.

Medio siglo de cribado neonatal en España: evolución de los aspectos éticos, legales y sociales (AELS). Parte III, aspectos sociales.

Fecha de publicación: Fecha Ahead of Print:

Autores de IIS La Fe

Participantes ajenos a IIS La Fe

  • Labrador Cañadas MV
  • Pàmpols Ros T
  • Dulín Íñiguez E
  • García Sagredo JM
  • Díaz de Bustamante A
  • Martín Arribas C
  • García López FJ
  • Nicolás Jiménez P

Abstract

Decision 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.

Datos de la publicación

ISSN/ISSNe:
1135-5727, 2173-9110

REVISTA ESPANOLA DE SALUD PUBLICA  MINISTERIO DE SANIDAD Y CONSUMO

Tipo:
Article
Páginas:
-
DOI:
PubMed:
33496273
Factor de Impacto:
0,271 SCImago ℠
Cuartil:
Q3 SCImago ℠

Documentos

  • No hay documentos

Métricas

Filiaciones mostrar / ocultar

Keywords

  • Ethical, legal and social issues (ELSIs), Evidentiary model of policy development, Extemporary model, Governance of newborn screening programs, Models of development of newborn screening policies, Newborn screening, Newborn screening for rare diseases, Patient organizations, Psychosocial aspects, Scientific and professional societies, Spain

Proyectos y Estudios Clínicos

RED DE SALUD MATERNO-INFANTIL Y DEL DESARROLLO

RD08/0072/0022 . INSTITUTO DE SALUD CARLOS III; FUNDACIÓN PARA LA INVESTIGACIÓN DEL HOSPITAL UNIVERSITARIO LA FE DE LA COMUNIDAD VALENCIANA . 2008

RED DE SALUD MATERNO INFANTIL Y DEL DESARROLLO

Investigador Principal: MÁXIMO VENTO TORRES

RD12/0026/0012 . INSTITUTO DE SALUD CARLOS III; FUNDACIÓN PARA LA INVESTIGACIÓN DEL HOSPITAL UNIVERSITARIO LA FE DE LA COMUNIDAD VALENCIANA . 2013

Cita

Compartir