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Project

Kwalitatief onderzoek over geïnformeerd kiezen bij systematisch neonataal opsporen van mucoviscidose.

The Flemish screening programme for congenital diseases (see also www.bevolkingsonderzoek.be), also known as screening in newborns or heel prick screening, has been organized for decades in Flanders. Until 2010 the screening programme only consisted of collecting and analyzing a blood sample in babies. Since 2012, a managing contract exists between the Flemish Government and two organizations working 'on the field' (PCMA and VCBMA) which have to implement the screening programme with more emphasis on the phases before and following the analysis of the samples (communication, informing about the result, increasing the expertise of the different care providers involved and quality assurance). On the dried blood sample (the so-called 'Guthrie-test') 11 congenital diseases are detected, amongst which several rare diseases. Presently the implementation of detecting cystic fibrosis (CF) is being prepared. Possibly the list with diseases will in the future even be extended. The proposed screening algorithm to detect CF in newborns is stepped and consists of a DNA-analysis in the second phase. It would be the first disease within the screening programme for which a DNA-analysis belongs to the screening algorihtm. By performing a DNA-analysis and detecting a limited number of mutations and possibly a number of carriers, the ethical dimension of the existing screening programme changes completely. The fact that parents have to take a decision for their baby, makes the discussion even more delicate. To date, the information which is provided to the parents beforehand with a view to making an informed choice, remains limited to a flyer which is handed over to the parents in the maternity ward, just before the sample is collected. No ideal moment, because parents are most of the time completely occupied with the birth of their baby. Because informing parents on this screening programme with 11 diseases - which are unknown as well to citizens as to many of the involved caregivers - is complex, and screening with a genetic test is even making the complexity much bigger, it is relevant to know what (future) parents' attitude is about this topic. Also knowing the viewpoint of parents regarding informed consent/dissent/opting in/opting out is necessary to take an appropriate policy decision. Which information do parents want to receive, at which moment, and how, are important questions on which the answers can help to construct a successful communication strategy when implementing a screening programme for CF. The results of this study on the information need will be translated to a procedure on how to communicate to future parents about CF-screening and how to receive from them an informed consent.
Datum:1 sep 2017 →  15 mei 2018
Trefwoorden:KWALITATIEF ONDERZOEK
Disciplines:Maatschappelijke gezondheidszorg, Gezondheidswetenschappen, Publieke medische diensten