Learning about the genetic risk in my family: preferences of Italian nurses

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Abstract

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 Cancer Syndromes, and early-onset Alzheimer’s disease) and items assessing genetic literacy (awareness), family cohesion, disclosure preferences, and responsibility. Quantitative data were analyzed descriptively and inferentially, and qualitative responses were analyzed inductively using reflexive thematic analysis. Among the 1,302 respondents, 501 were healthcare professionals (HCPs), including 315 nurses. Their genetic literacy was modest (mean 2.5/4), higher than laypeople’s, with no variation by age or education. Nearly all (94.9%) wished to be informed of genetic risk for at least one condition, with 75.9% preferring to be informed for all three, similar to laypeople (78.1%). Most (97.8%) would undergo genetic testing if informed (95.6% of laypeople). Responsibility for disclosure was viewed as shared between relatives and HCPs (39.1%) or by everyone involved (themselves, relatives and HCPs) (25.1%), echoing laypeople’s views. Qualitative findings from the few who did not wish to be informed (n=16) emphasized anxiety, psychological self-protection, and scepticism toward predictive medicine, similar to laypeople. Italian nurses expressed views and preferences similar to laypeople. While they valued receiving genetic risk information and HCP involvement in family communication, limited familiarity with clinical applications of genetic testing highlights a gap in nursing education and practice, with implications for targeted training.

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