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Societal preferences for disclosure of incidental findings from clinical genomics: Perspectives of cancer patients and the general population

Status: 
Active
Competition: 
Societal Implications of Genomics Research
Sector: 
Health
Genome Centre(s):
Génome Québec
Project Leader(s):
Michel Dorval (Laval University)
Fiscal Year Project Launched: 
2017-2018
Project Description: 

Thanks to next-generation sequencing, it can be more cost-effective to test a whole genome than to sequence a single gene. Doing so in medical genetics raises a number of ethical questions, though. Among the most important: What happens when the test reveals unexpected results, known as incidental findings?

There is no consensus regarding whether and how to disclose such findings either in the research or clinical context, and available guidelines are contradictory. Dr. Michel Dorval of Laval University is assessing the views and attitudes of patients with cancer and the general population regarding the disclosure of incidental findings in a clinical context, including how such findings should be disclosed, if at all, and their perceptions of the psycho-social impacts of such disclosure.

The research results will help to fill a gap in Quebec data by demonstrating the extent to which the views of patients and the general population conform to, or differ from, those of professionals. They will help inform the development of policies and recommendations for disclosing incidental findings in a way that respects the concerns of patients and the population.