Context is complex: attitudes to incorporating genomic risk profiling into population screening programs. S. G. Nicholls1, H. Etchegary2, J. C. Carroll3, D. Castle4, L. Lemyre5, B. K. Potter1, J. Little1,6, B. J. Wilson1 on behalf of the CIHR Emerging Team in Genomics and Screening 1) Department of Epidemiology & Community Medicine, University of Ottawa, ON, Canada; 2) Clinical Epidemiology, Memorial University Newfoundland, St John's, NL, Canada; 3) Family Medicine, Mount Sinai Hospital, University of Toronto, ON, Canada; 4) ESRC Innogen Centre, University of Edinburgh, Edinburgh, UK; 5) School of Psychology & Institute of Population Health, University of Ottawa, ON, Canada; 6) Canada Research Chair in Human Genome Epidemiology.
Background: The potential inclusion of genomic risk profiling into population-based screening programs may enable more targeted use of different types and intensities of screening and follow-up. However, the use of genomic profiling within screening will depend in part on public attitudes. It is, therefore, important to engage in a scientific understanding of public attitudes and respond to their concerns to ensure the effective and appropriate implementation of these applications. Objectives: To identify (i) general reactions to the idea of incorporating genomic risk profiling into routine screening activities, and (ii) responses to specific issues that may require consideration before implementing genomic risk profiling into routine screening using colorectal cancer (CRC) and newborn bloodspot screening (NBS) as examples. Methods: Eight workshops (5 CRC, 3 NBS) were conducted in Ontario and Newfoundland and Labrador, Canada. Participants were provided information regarding the possible personal, health system and societal implications of the technology. Discussions were recorded using field notes and written responses. Participants also completed a structured survey and indicated, from a list, words that best described their attitudes toward the technology. Results: Participants (N=170; 120 CRC and 50 NBS) varied in attitude; more participants in the CRC groups indicated that they were enthusiastic or optimistic, while participants in the NBS workshops were more worried or had mixed feelings. More NBS participants were concerned that a result indicating increased risk would cause extra worry compared to those in the CRC workshops (91% vs 49% respectively; p<0.01). Other differences included the relevance of results for their family (89% CRC vs 61% NBS; p<0.01 ). In both contexts concern was expressed regarding who had access to test results and implications for insurance. Conclusion: Consistent with previous studies in genetic testing, public attitudes appeared to be contingent on the context in which the genomic risk profiling technology was applied. Public attitudes to genomic technologies must, therefore, be considered in a nuanced, context-specific manner and broad brush assessments avoided. A one-size generic policy is unlikely to be satisfactory. That being said, concerns over access to test results and implications on for insurance were common to both contexts.
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