Standardisation des mesures du risque pathologique et individualisation de la prise en charge. Les effets paradoxaux du dépistage néonatal systématique de la mucoviscidose

The paradoxical effects of the routine neonatal screening for cystic fibrosisDriven by advances in molecular biology, genetic tests now allow for a focus on early prevention and personalized care for some chronic diseases. Through the analysis of the impact of mass public screening, namely the routine neonatal screening for cystic fibrosis, this article intends to explain the metrological mechanism which underlies its implementation and leads to a “disembodied” clinical condition. Far from negating clinical work, standardization of the measure of disease risk, prior to screening, generates grey areas. We are witnessing the extension of definition of diseases resulting in the multiplication and complexity of clinical conditions ranging from normal to pathological. The rationalization of procedures is hampered by the high level of scientific and clinical uncertainties which poses the problem of classifying those at risk. Faced with new scenarios, the elaboration of a high-risk medicine on a large scale paradoxically strengthens the case for the individualization of patient care

New ethical stakes raised since the French nationwide cystic fibrosis newborn screening program was initiated

Cystic Fibrosis (CF) newborn screening (NBS) has been controversial for many years in France; the long term benefit on pulmonary function test is not yet demonstrated but its median term benefits on nutritional parameters are established as soon as the CF screened infant follow-up is done in a specialized centre. In 2003, the French association “Vaincre La Mucoviscidose” published recommendations addressed at CRCM concerning post-neonatal screening cystic fibrosis diagnosis announcement. Focus: Taking the French CF neonatal screening program as a case study, we conducted both a quantitative data survey & a focus groups protocol to gain information on the attitudes, beliefs, & concerns of professionals about newborn screening (NBS) & clinical guidelines, this paper points new bioethical issues from the concrete application of this technology. Method: Collective (team) and individual (professionals concerned) interviews in 15 typical centres (historic centres, low practice centres with limited resources, high practice centres with considerable resources). Results:  The most important ethical dilemma is the trouble issued of the cystic fibrosis sickness singularity because: 1) all the children that carry the mutations are not affected with a severe disease; 2) there is no curative treatment; 3) parents given information are made anxious, sometimes wrongly if the disease is mild or asymptomatic. The second ethical issue is located in the distinction between two statuses: on one hand one can observe homozygotes (two mutations), confirmed CF; on the second hand, one can consider heterozygotes (one mutation) healthy carriers. For parents of these healthy infants, the period between learning of the screening result & the sweat test can provoke anxiety, and the long-term impact has not yet been clearly defined. Parents should receive genetic counselling for future family planning, to ensure that they understand the concepts of genetic transmission of CF. (3) However, diagnosis is not always straightforward and difficulties arise when exhaustive study of the gene, following a borderline sweat test (ST), detects a mild mutation or a previously unreported mutation of unknown effect

The Reconfiguration of the Relationship to Care for a Rare Disease: Neonatal Expended Screening in a Socio-material Perspective

Neonatal Screening (NBS) is a mass screening, secondary prevention policy aimed at detecting one or several often congenital disorders in all neonates in a given country. The French CF NBS programme is completely functional since the middle of 2003. Drawing its inspiration from the socio-material approach, this article advances a description and analysis of the interactions between the biomedical technologies used in neonatal cystic fibrosis screening and the resulting changes in clinical practice, the bioethical debate and finally in the interstice between voluntary individual consent to screening and the management of a population’s health. The analysis grid focuses on four dimensions: institutional, techno-scientific, regulatory and socio-professional. Backed up by a field survey conducted in the specialised healthcare centres, this study explores two major aspects of the repercussions of NBS: first, the genesis and insti- tutionalisation of this public policy and the impact of a more flexible form of Evidence Based Medicine (EBM) and the sustained controversy on the neonatal screening programme uniting the community of cystic fibrosis paediatrics. This study suggests that institutional stability remains fragile and in this respect constitutes a paradoxical form of production with incompleteness and uncertainty as constituting factors

La proyección de la imagen de Benedicto XVI por parte del diario El País: una reflexión sobre ética periodística a la luz de la ética empresarial

Journalistic ethics and business ethics have more in common than has been traditionally recognized. Thus, based on a sample of the informative treatment of Benedict XVI’s pontificate by a generalist newspaper -a reference newspaper in Spain-, some of the challenges that the former should address are proposed, considering the examination of the ideas offered by those who operate from the perspective of organizations.La ética periodística y la ética empresarial tienen más en común de lo que se ha reconocido tradicionalmente. Así, a partir de una muestra del tratamiento informativo realizado por un diario generalista -referente en España- al pontificado de Benedicto XVI, se proponen algunos de los retos a los que debe atender la primera, considerando el examen de las ideas ofrecidas por quienes operan desde la perspectiva de las organizaciones