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Deciding on cystic fibrosis carrier screening: three citizens' juries and an online survey.
Mosconi, Paola; Colombo, Cinzia; Roberto, Anna; Candiani, Giulia; Greco, Maria Teresa; Satolli, Roberto; Castellani, Carlo.
Afiliação
  • Mosconi P; Laboratory for Medical Research and Consumers Involvement, Department of Public Health, IRCCS Istituto di Ricerche Farmacologiche Mario Negri, Milan, Italy.
  • Colombo C; Laboratory for Medical Research and Consumers Involvement, Department of Public Health, IRCCS Istituto di Ricerche Farmacologiche Mario Negri, Milan, Italy.
  • Roberto A; Laboratory for Medical Research and Consumers Involvement, Department of Public Health, IRCCS Istituto di Ricerche Farmacologiche Mario Negri, Milan, Italy.
  • Candiani G; Zadig Agenzia di Editoria Scientifica, Milan, Italy.
  • Greco MT; Laboratory of Methodology for Clinical Research, Department of Oncology, IRCCS Istituto di Ricerche Farmacologiche Mario Negri, Milan, Italy.
  • Satolli R; Zadig Agenzia di Editoria Scientifica, Milan, Italy.
  • Castellani C; Centro Fibrosi Cistica dell'Azienda Ospedaliera Interuniversitaria Integrata, Verona, Italy.
Eur J Public Health ; 28(5): 973-977, 2018 10 01.
Article em En | MEDLINE | ID: mdl-29562330
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 of identifying healthy people who may have children with CF?' The jurors had no medical background and no personal or family CF history. The survey was open to people with CF, families, and healthcare professionals.

Results:

Jurors and survey respondents were in favour of CF carrier screening, mainly considering the severity of CF, the value of informed reproductive choices and the equality of the screening. All the citizens' juries felt positively about the health service actively offer CF carrier screening to provide women and couples of reproductive age equal access and standardized information on the pros and cons.

Conclusion:

Considering the favourable attitude towards CF screening, the feasibility of CF screening, in terms of best setting, target age and healthcare professionals providing it, should be tested in a clinical trial.
Assuntos

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Opinião Pública / Atitude Frente a Saúde / Programas de Rastreamento / Saúde Pública / Fibrose Cística / Política de Saúde Tipo de estudo: Clinical_trials / Diagnostic_studies / Health_technology_assessment / Prognostic_studies / Qualitative_research / Screening_studies Limite: Humans Idioma: En Ano de publicação: 2018 Tipo de documento: Article

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Opinião Pública / Atitude Frente a Saúde / Programas de Rastreamento / Saúde Pública / Fibrose Cística / Política de Saúde Tipo de estudo: Clinical_trials / Diagnostic_studies / Health_technology_assessment / Prognostic_studies / Qualitative_research / Screening_studies Limite: Humans Idioma: En Ano de publicação: 2018 Tipo de documento: Article