Preferences for genetic testing for colorectal cancer within a population-based screening program: a discrete choice experiment

• Published in: European journal of human genetics : EJHG Vol. 24; no. 3; pp. 361 - 366
• Main Authors: Veldwijk, Jorien, Lambooij, Mattijs S, Kallenberg, Frank G J, van Kranen, Henk J, Bredenoord, Annelien L, Dekker, Evelien, Smit, Henriëtte A, de Wit, G Ardine
• Format: Journal Article
• Language: English
• Published: England Nature Publishing Group 01.03.2016
• Subjects: Adenomatous Polyposis Coli - genetics; Anxiety; Choice Behavior; Colon; Colonoscopy; Colorectal cancer; Colorectal carcinoma; Colorectal Neoplasms - diagnosis; Colorectal Neoplasms - genetics; Colorectal Neoplasms, Hereditary Nonpolyposis - genetics; Demography; Disease prevention; Early Detection of Cancer; Economic models; Experiments; Familial adenomatous polyposis; Female; Gastroenterology; Genetic counseling; Genetic screening; Genetic Testing; Genetics; Health services; Health surveillance; Humans; Male; Medical prognosis; Medical research; Medical screening; Middle Aged; Participation; Population; Public health; Survival; Netherlands
• ISSN: 1018-4813; 1476-5438
• DOI: 10.1038/ejhg.2015.117

This study explored individuals' preferences for genetic testing for colorectal cancer (CRC) in a screening situation and their willingness to participate in genetic testing for Lynch syndrome, familial adenomatous polyposis (FAP), and familial colorectal cancer (FCC). For that purpose, 532 respondents aged 55-65 years completed a Discrete Choice Experiment. Using panel latent class models, the preferences for two screening situation characteristics (the probability of being genetically predisposed and the probability of developing CRC) and screening test characteristics (the frequency of preventive colonoscopies and CRC survival) were estimated. Based on these preferences, respondents' willingness to participate in the three screening initiatives was estimated. Lower-educated respondents and respondents who express serious anxiety and worries found colonoscopy frequency and the probability of developing CRC relatively more important and survival relatively less important compared with higher-educated respondents and respondents who express no anxiety and worries. These differences in preferences resulted in opposite preferences for participation in FCC and FAP screening. In conclusion, the general population is willing to participate in genetic screening for CRC. If individuals are suspected of genetic or familial CRC, they should at least be informed about their increased risk of being genetically predisposed and about the importance of participating in all preventive follow-up colonoscopies in order to maximize survival.