PT  - JOURNAL ARTICLE
AU  - Dean A. Regier
AU  - Stuart J. Peacock
AU  - Reka Pataky
AU  - Kimberly van der Hoek
AU  - Gail P. Jarvik
AU  - Jeffrey Hoch
AU  - David Veenstra
TI  - Societal preferences for the return of incidental findings from clinical genomic sequencing: a discrete-choice experiment
AID  - 10.1503/cmaj.140697
DP  - 2015 Apr 07
TA  - Canadian Medical Association Journal
PG  - E190--E197
VI  - 187
IP  - 6
4099  - http://www.cmaj.ca/content/187/6/E190.short
4100  - http://www.cmaj.ca/content/187/6/E190.full
SO  - CMAJ2015 Apr 07; 187
AB  - Background: An important challenge with the application of next-generation sequencing technology is the possibility of uncovering incidental genomic findings. A paucity of evidence on personal utility for incidental findings has hindered clinical guidelines. Our objective was to estimate personal utility for complex information derived from incidental genomic findings.Methods: We used a discrete-choice experiment to evaluate participants’ personal utility for the following attributes: disease penetrance, disease treatability, disease severity, carrier status and cost. Study participants were drawn from the Canadian public. We analyzed the data with a mixed logit model.Results: In total, 1200 participants completed our questionnaire (available in English and French). Participants valued receiving information about high-penetrance disorders but expressed disutility for receiving information on low-penetrance disorders. The average willingness to pay was $445 (95% confidence interval [CI] $322–$567) to receive incidental findings in a scenario where clinicians returned information about high-penetrance, medically treatable disorders, but only 66% of participants (95% CI 63%–71%) indicated that they would choose to receive information in that scenario. On average, participants placed an important value ($725, 95% CI $600–$850) on having a choice about what type of findings they would receive, including receipt of information about high-penetrance, treatable disorders or receipt of information about high-penetrance disorders with or without available treatment. The predicted uptake of that scenario was 76% (95% CI 72%–79%).Interpretation: Most participants valued receiving incidental findings, but personal utility depended on the type of finding, and not all participants wanted to receive incidental results, regardless of the potential health implications. These results indicate that to maximize benefit, participant-level preferences should inform the decision about whether to return incidental findings.