%0 Journal Article
%T Recomendaciones sobre los aspectos ¨¦ticos de los programas de cribado de poblaci¨®n para enfermedades raras
%A P¨¤mpols Ros
%A Teresa
%A Terracini
%A Benedetto
%A Abajo Iglesias
%A Francisco J. de
%A Feito Grande
%A Lydia
%A Mart¨ªn-Arribas
%A Ma Concepci¨®n
%A Fern¨¢ndez Soria
%A Jos¨¦ Mar¨ªa
%A Redondo Mart¨ªn del Olmo
%A Tom¨¢s
%A Campos Castell¨®
%A Jaime
%A Herrera Carranza
%A Joaqu¨ªn
%A J¨²dez Guti¨¦rrez
%A Javier
%A Abascal Alonso
%A Mois¨¦s
%A Morales Piga
%A Antonio
%J Revista Espa£¿ola de Salud P¨²blica
%D 2010
%I Ministerio de Sanidad y Consumo
%R 10.1590/S1135-57272010000200002
%X the committee on ethics of the instituto de investigaci¨®n de enfermedades raras (ceiier) of the spanish national institute of health carlos iii, presents this article dealing with ethical guidelines regarding the implementation of screening population programmes with special emphasis on genetic screening. after a critical review it has been addressed 24 recommendations concerning 14 topics: evaluation of the opportunity of the programme, including ethical analysis besides scientific evidences and cost/benefits issues; the need to differentiate between research and public health intervention and to built a specific and comprehensive programme; the creation of an interdisciplinary working group which control its implementation and prepare a protocol including justification, development, therapeutic or preventive actions and follow-up activities; the review of the programme by an independent ethical committee; the guarantee of the voluntary, universal and equitable population access, which requires sufficient information on the programme and their specific relevant facts, as incidental detection of heterozygous state in minors in newborn screening and the relevance of non directive genetic counselling specially in prenatal screening offered to pregnant women; considerations regarding future uses of samples for research purposes; total quality and periodic programme evaluation; guarantee of personal data confidentiality and the conflict of interest statement of the members of all the committees involved in the programme.
%K ethics
%K genetic testing
%K mass screening
%K neonatal screening
%K rare diseases
%K ethics clinical.
%U http://www.scielosp.org/scielo.php?script=sci_abstract&pid=S1135-57272010000200002&lng=en&nrm=iso&tlng=en