Implementing carrier screening for cystic fibrosis outside the clinic: ethical analysis in the light of the personalist view.

BACKGROUND: Cystic Fibrosis (CF) is an autosomal recessive genetic disease. Two models for screening CF are normally used: newborn screening and population-based CF carrier screening. In turn, there are three main models of population-based CF carrier screening: prenatal carrier screening, preconception carrier screening, and carrier screening outside clinical settings. AIM: To evaluate, in the light of the personalist view, the use of carrier screenings for CF outside the clinic, i.e. in non-clinical settings, such as school and workplaces. METHODS: Analysis has been carried out according to the "Personalist approach" (also called "Triangular model"), an ethical method for performing ethical analysis within HTA process. It includes factual, anthropological and ethical data in a ''triangular'' normative reflection process. FINDINGS: Implementing carrier screening for cystic fibrosis outside the clinical settings allows acquisition of knowledge for informing reproductive choices, that can be considered as valuable; benefit-risk ratio seems to be not much favorable; autonomous and responsible decisions can be taken only under certain conditions; economic advantage is difficult to determine; therefore, from a personalist view, implementing carrier screenings outside the clinic seems not to be ethically justified. CONCLUSIONS: In accordance with the personalist perspective, public health programs providing carrier screenings outside the clinic should not be implemented.

[On the moral dutifulness of using vaccinations]. / Sulla "doverosità morale" dell'uso di vaccine.

People had contradictory opinions on using vaccinations over time: an initial opposition, later large favour and then doubts and perplexities. In recent times, some movements, blogs and associations stigmatize the use of vaccinations and they are increasingly asking to remove mandatory vaccinations in countries where they are active. The impact of the antivaccination campaigns should not be underestimated, considering that, for example, in Italy, due to these campaigns, adhesions to vaccinations are decreasing by 1% per year, and in reference to rubella and measles, adhesions decreased by 25% in some regions of the country. Overcoming the choice between mandatory and recommended vaccinations, the paper deals with the topic of using preventive immunization starting from the concept of "moral dutifulness".

[PedsQL™ 4.0 Generic Core Infant Scales Parents Report for infants (ages 13-24 months). Linguistic validation from original US English version to Italian version]. / PedsQL™ 4.0 Generic Core Infant Scales Parents Report versione per i genitori di bambini in eta prescolare (eta 13-24 mesi): validazione linguistica della versione italiana.

AIM: The purpose of this research was to show the translation and linguistic validation of the PedsQL™ 4.0 Generic Core Infant Scales Parents Report for Infants (ages 13-24 months) from its original English version to Italian language. METHODS: The linguistic validation consists in three steps: a) different forward translations from the original US English instrument to Italian; this step includes the drawing of a "reconciliation" version (version 1); b) backward translations from the Italian reconciliation version to US English; c) patient testing: the second version of the questionnaire (obtained after the backward translations) has to be tested on a panel of a minimum of 5 respondents, throughout cognitive interviewing methodology, in order to obtain the final italian version of the PedsQL™ Parents Report for Infants (ages 13-24 months). In this report we summarize the third step of this process. To study the content validity, the applicability and comprehension of our questionnarie translation, we tested it through a qualitative methodology in a sample of parents whose children were hospitalized in Bambino Gesù Children's Hospital with two different kinds of interview: 4 parents responded to the questions posed through a "thinkaloud interview" and 3 parents responded to the questionnaire and to a "respondent debriefing" interview. RESULTS AND CONCLUSION: We modified the main question of each section and also one of the possible answer in order to maintain the Italian translation that appeared in others PedsQL™. We did not modify the questions of each section because respondents expressed that are clearly comprehensible and easy to understand.