This study explores Italian nurses’ preferences and views regarding the disclosure and sharing of genetic risk information within families, focusing on their genetic literacy and responsibility, and comparing these perspectives with laypeople. A nested cross-sectional online survey, originally designed for the general population, included three hypothetical scenarios of inherited genetic risk (Cystic Fibrosis, Hereditary Cance...

We surveyed the preferences of Italian laypersons ( n = 609) regarding the communication of genetic risk information to and within families, presenting scenarios about three genetic conditions (Cystic Fibrosis, CF; Hereditary Cancer, HC; and early-onset Alzheimer’s disease, AD). We found that almost all of the participants (565/609, 93%) were interested in receiving genetic risk information about at least one of the diseases,...

Cognitive interviews are a valuable qualitative method for developing and refining survey instruments, particularly on complex topics such as genetic health. They help address misunderstandings between intended meanings and respondent interpretations, enhancing data validity and ensuring comprehensibility. This study aimed to refine a questionnaire exploring the attitudes and preferences of the Italian general population regar...

In 2002, in the Emilia-Romagna region of Italy, a comprehensive strategic plan was developed with the aim of improving the integration and efficiency of the genetic services. Two decades later, this report aims to explore the current functioning of the regional network, with special focus on clinical genetics in the evolving scenarios. To this aim, we analyzed the activity data of the medical genetics services in the region, t...