RT Journal Article
SR Electronic
T1 Societal preferences for the return of incidental findings from clinical genomic sequencing: a discrete-choice experiment
JF Canadian Medical Association Journal
JO CMAJ
FD Canadian Medical Association
SP E190
OP E197
DO 10.1503/cmaj.140697
VO 187
IS 6
A1 Dean A. Regier
A1 Stuart J. Peacock
A1 Reka Pataky
A1 Kimberly van der Hoek
A1 Gail P. Jarvik
A1 Jeffrey Hoch
A1 David Veenstra
YR 2015
UL http://www.cmaj.ca/content/187/6/E190.abstract
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.