Perspectives of Italian lay persons who would decline genetic risk information: “I think I'd be living in constant worry”

This study explores lay public perspectives on intrafamilial genetic risk communication, focusing on individuals who hypothetically choose not to receive genetic information, a largely overlooked population in genetic counseling research. A nested cross-sectional online survey combining both closed- and open-ended questions was used. Quantitative data included sociodemographic characteristics, family functioning as measured with the SCORE-15, genetic literacy (score range 0-4), and preferences regarding whether participants would want to be informed of a genetic risk in their family across three hypothetical scenarios (Cystic Fibrosis, Hereditary Breast and Ovarian Cancer and early-onset Alzheimer's disease). These data were analyzed using descriptive and inferential statistics. Qualitative data, consisting of open-ended responses on the reasons for not wanting to be informed, were analyzed inductively through reflexive thematic analysis. Of the 609 lay participants, 44 (7.2%) expressed a hypothetical preference not to be informed of a genetic risk in their family. Qualitative analysis of their responses revealed four main themes: (1) worry about anxiety and emotional distress in oneself and loved ones; (2) protection against psychological harm; (3) probability, uncertainty, and skepticism about preventive medicine; and (4) worry about stigma. These findings highlight the emotional, ethical, and social complexity behind the decision to decline genetic risk information and underscore the need for strategies to encourage and facilitate intrafamilial genetic risk communication that goes beyond education alone.