Cystic fibrosis: to screen or not to screen? Involving a Citizens' jury in decisions on screening carrier.

Mosconi P1, Castellani C, Villani W, Satolli R.

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Abstract

CONTEXT:

In recent years, the continuous improvements in molecular biology techniques have made it possible to detect carriers for several genetic conditions, including cystic fibrosis (CF). In some countries, CF carrier screening is offered to increasing subset of the general population. Offering of carrier screening at a population level should not be decided by local health authorities only, without consulting citizens' preferences. One way to involve citizens in the decision process might be to a Citizens' jury, a method of deliberative democracy.

OBJECTIVE:

The object of the study is to produce a recommendation statement about CF carrier screening using a Citizens' jury. As this is a new method in the field, the study also provided the opportunity to evaluate its effectiveness.

DESIGN:

The project is designed and managed by an executive committee. The whole process is superintended by a multidisciplinary scientific committee. The 16 members of the jury attend a 1 day meeting, assisted by a non-medical and unbiased facilitator. Informative material was prepared and distributed 15 days before the jury meeting; during the meeting, experts and witnesses interact directly with all the jurors through questions and answers.

RESULTS:

All except one member of the jury felt positively about the Health Service actively providing population carrier screening for CF. The final statement was available to public, clinicians, researchers and decision-makers.

DISCUSSION:

In general, a Citizens' jury is a feasible method for involving citizens in public health decision-making process and in particular for obtaining a community view about CF carrier screening.