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Research

Societal preferences for the return of incidental findings from clinical genomic sequencing: a discrete-choice experiment

Dean A. Regier, Stuart J. Peacock, Reka Pataky, Kimberly van der Hoek, Gail P. Jarvik, Jeffrey Hoch and David Veenstra
CMAJ April 07, 2015 187 (6) E190-E197; DOI: https://doi.org/10.1503/cmaj.140697
Dean A. Regier
Canadian Centre for Applied Research in Cancer Control (Regier, Peacock, Pataky, van der Hoek), Cancer Control Research, BC Cancer Agency, Vancouver, BC; School of Population and Public Health (Regier, Peacock, Pataky), University of British Columbia, Vancouver, BC; Department of Medicine (Medical Genetics) (Jarvik), Department of Genome Sciences (Jarvik) and Pharmaceutical Outcomes Research and Policy Program, Department of Pharmacy (Veenstra), University of Washington, Seattle, Wash.; Pharmacoeconomics Research Unit (Hoch), Cancer Care Ontario, Toronto, Ont.; Canadian Centre for Applied Research in Cancer Control (Hoch), Toronto, Ont.
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  • For correspondence: dregier@bccrc.ca
Stuart J. Peacock
Canadian Centre for Applied Research in Cancer Control (Regier, Peacock, Pataky, van der Hoek), Cancer Control Research, BC Cancer Agency, Vancouver, BC; School of Population and Public Health (Regier, Peacock, Pataky), University of British Columbia, Vancouver, BC; Department of Medicine (Medical Genetics) (Jarvik), Department of Genome Sciences (Jarvik) and Pharmaceutical Outcomes Research and Policy Program, Department of Pharmacy (Veenstra), University of Washington, Seattle, Wash.; Pharmacoeconomics Research Unit (Hoch), Cancer Care Ontario, Toronto, Ont.; Canadian Centre for Applied Research in Cancer Control (Hoch), Toronto, Ont.
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Reka Pataky
Canadian Centre for Applied Research in Cancer Control (Regier, Peacock, Pataky, van der Hoek), Cancer Control Research, BC Cancer Agency, Vancouver, BC; School of Population and Public Health (Regier, Peacock, Pataky), University of British Columbia, Vancouver, BC; Department of Medicine (Medical Genetics) (Jarvik), Department of Genome Sciences (Jarvik) and Pharmaceutical Outcomes Research and Policy Program, Department of Pharmacy (Veenstra), University of Washington, Seattle, Wash.; Pharmacoeconomics Research Unit (Hoch), Cancer Care Ontario, Toronto, Ont.; Canadian Centre for Applied Research in Cancer Control (Hoch), Toronto, Ont.
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Kimberly van der Hoek
Canadian Centre for Applied Research in Cancer Control (Regier, Peacock, Pataky, van der Hoek), Cancer Control Research, BC Cancer Agency, Vancouver, BC; School of Population and Public Health (Regier, Peacock, Pataky), University of British Columbia, Vancouver, BC; Department of Medicine (Medical Genetics) (Jarvik), Department of Genome Sciences (Jarvik) and Pharmaceutical Outcomes Research and Policy Program, Department of Pharmacy (Veenstra), University of Washington, Seattle, Wash.; Pharmacoeconomics Research Unit (Hoch), Cancer Care Ontario, Toronto, Ont.; Canadian Centre for Applied Research in Cancer Control (Hoch), Toronto, Ont.
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Gail P. Jarvik
Canadian Centre for Applied Research in Cancer Control (Regier, Peacock, Pataky, van der Hoek), Cancer Control Research, BC Cancer Agency, Vancouver, BC; School of Population and Public Health (Regier, Peacock, Pataky), University of British Columbia, Vancouver, BC; Department of Medicine (Medical Genetics) (Jarvik), Department of Genome Sciences (Jarvik) and Pharmaceutical Outcomes Research and Policy Program, Department of Pharmacy (Veenstra), University of Washington, Seattle, Wash.; Pharmacoeconomics Research Unit (Hoch), Cancer Care Ontario, Toronto, Ont.; Canadian Centre for Applied Research in Cancer Control (Hoch), Toronto, Ont.
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Jeffrey Hoch
Canadian Centre for Applied Research in Cancer Control (Regier, Peacock, Pataky, van der Hoek), Cancer Control Research, BC Cancer Agency, Vancouver, BC; School of Population and Public Health (Regier, Peacock, Pataky), University of British Columbia, Vancouver, BC; Department of Medicine (Medical Genetics) (Jarvik), Department of Genome Sciences (Jarvik) and Pharmaceutical Outcomes Research and Policy Program, Department of Pharmacy (Veenstra), University of Washington, Seattle, Wash.; Pharmacoeconomics Research Unit (Hoch), Cancer Care Ontario, Toronto, Ont.; Canadian Centre for Applied Research in Cancer Control (Hoch), Toronto, Ont.
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David Veenstra
Canadian Centre for Applied Research in Cancer Control (Regier, Peacock, Pataky, van der Hoek), Cancer Control Research, BC Cancer Agency, Vancouver, BC; School of Population and Public Health (Regier, Peacock, Pataky), University of British Columbia, Vancouver, BC; Department of Medicine (Medical Genetics) (Jarvik), Department of Genome Sciences (Jarvik) and Pharmaceutical Outcomes Research and Policy Program, Department of Pharmacy (Veenstra), University of Washington, Seattle, Wash.; Pharmacoeconomics Research Unit (Hoch), Cancer Care Ontario, Toronto, Ont.; Canadian Centre for Applied Research in Cancer Control (Hoch), Toronto, Ont.
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Abstract

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.

  • Received March 9, 2015.
  • Accepted June 15, 2015.
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Canadian Medical Association Journal: 187 (6)
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Vol. 187, Issue 6
7 Apr 2015
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Societal preferences for the return of incidental findings from clinical genomic sequencing: a discrete-choice experiment
Dean A. Regier, Stuart J. Peacock, Reka Pataky, Kimberly van der Hoek, Gail P. Jarvik, Jeffrey Hoch, David Veenstra
CMAJ Apr 2015, 187 (6) E190-E197; DOI: 10.1503/cmaj.140697

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Societal preferences for the return of incidental findings from clinical genomic sequencing: a discrete-choice experiment
Dean A. Regier, Stuart J. Peacock, Reka Pataky, Kimberly van der Hoek, Gail P. Jarvik, Jeffrey Hoch, David Veenstra
CMAJ Apr 2015, 187 (6) E190-E197; DOI: 10.1503/cmaj.140697
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