Deciding on cystic fibrosis carrier screening: three citizens' juries and an online survey.

ABSTRACT: Background:Health technology assessment and ethical issues have to be dealt with in deciding on national carrier screening for cystic fibrosis (CF)-the most frequent severe autosomal recessive disease in Caucasian populations and several stakeholders need to be involved. A citizens' jury is one way to ask citizens to deliberate on controversial topics in the interests of a society. The aims of this project were to gather opinions about CF carrier screening through citizens' jury deliberations and to match them with the findings of a large online consultation survey open to the general population, people with CF and families and health professionals. Methods:Three citizens' juries and an online survey were asked: 'Should the Health Service organize screening of the population with the aim o

SUBMITTER: Mosconi P 

PROVIDER: S-EPMC6148966 | biostudies-literature | 2018 Oct

REPOSITORIES: biostudies-literature