Vikram Kilambi1, F Reed Johnson2, Juan Marcos González3, Ateesha F Mohamed4. 1. Center for Engineering and Health, Northwestern University, Evanston, IL, USA; Health Preference Assessment Group, RTI Health Solutions, Research Triangle Park, NC USA. 2. Duke Clinical Research Institute, Duke University, Durham, NC, USA. Electronic address: vkilambi@u.northwestern.edu. 3. Duke Clinical Research Institute, Duke University, Durham, NC, USA. 4. Health Preference Assessment Group, RTI Health Solutions, Research Triangle Park, NC USA.
Abstract
BACKGROUND: The value of the information that genetic testing services provide can be questioned for insurance-based health systems. The results of genetic tests oftentimes may not lead to well-defined clinical interventions; however, Lynch syndrome, a genetic mutation for which carriers are at an increased risk for colorectal cancer, can be identified through genetic testing, and meaningful health interventions are available via increased colonoscopic surveillance. Valuations of test information for such conditions ought to account for the full impact of interventions and contingent outcomes. OBJECTIVES: To conduct a discrete-choice experiment to elicit individuals' preferences for genetic test information. METHODS: A Web-enabled discrete-choice experiment survey was administered to a representative sample of US residents aged 50 years and older. In addition to specifying expenditures on colonoscopies, respondents were asked to make a series of nine selections between two hypothetical genetic tests or a no-test option under the premise that a relative had Lynch syndrome. The hypothetical genetic tests were defined by the probability of developing colorectal cancer, the probability of a false-negative test result, privacy of the result, and out-of-pocket cost. A model specification identifying necessary interactions was derived from assumptions of risk behavior and the decision context and was estimated using random-parameters logit. RESULTS: A total of 650 respondents were contacted, and 385 completed the survey. The monetary equivalent of test information was approximately $1800. Expenditures on colonoscopies to reduce mortality risks affected valuations. Respondents with lower income or who reported being employed significantly valued genetic tests more. CONCLUSION: Genetic testing may confer benefits through the impact of subsequent interventions on private individuals.
BACKGROUND: The value of the information that genetic testing services provide can be questioned for insurance-based health systems. The results of genetic tests oftentimes may not lead to well-defined clinical interventions; however, Lynch syndrome, a genetic mutation for which carriers are at an increased risk for colorectal cancer, can be identified through genetic testing, and meaningful health interventions are available via increased colonoscopic surveillance. Valuations of test information for such conditions ought to account for the full impact of interventions and contingent outcomes. OBJECTIVES: To conduct a discrete-choice experiment to elicit individuals' preferences for genetic test information. METHODS: A Web-enabled discrete-choice experiment survey was administered to a representative sample of US residents aged 50 years and older. In addition to specifying expenditures on colonoscopies, respondents were asked to make a series of nine selections between two hypothetical genetic tests or a no-test option under the premise that a relative had Lynch syndrome. The hypothetical genetic tests were defined by the probability of developing colorectal cancer, the probability of a false-negative test result, privacy of the result, and out-of-pocket cost. A model specification identifying necessary interactions was derived from assumptions of risk behavior and the decision context and was estimated using random-parameters logit. RESULTS: A total of 650 respondents were contacted, and 385 completed the survey. The monetary equivalent of test information was approximately $1800. Expenditures on colonoscopies to reduce mortality risks affected valuations. Respondents with lower income or who reported being employed significantly valued genetic tests more. CONCLUSION: Genetic testing may confer benefits through the impact of subsequent interventions on private individuals.
Authors: Heather Hampel; Wendy L Frankel; Edward Martin; Mark Arnold; Karamjit Khanduja; Philip Kuebler; Hidewaki Nakagawa; Kaisa Sotamaa; Thomas W Prior; Judith Westman; Jenny Panescu; Dan Fix; Janet Lockman; Ilene Comeras; Albert de la Chapelle Journal: N Engl J Med Date: 2005-05-05 Impact factor: 91.245
Authors: F Reed Johnson; Emily Lancsar; Deborah Marshall; Vikram Kilambi; Axel Mühlbacher; Dean A Regier; Brian W Bresnahan; Barbara Kanninen; John F P Bridges Journal: Value Health Date: 2013 Jan-Feb Impact factor: 5.725
Authors: H F Vasen; J T Wijnen; F H Menko; J H Kleibeuker; B G Taal; G Griffioen; F M Nagengast; E H Meijers-Heijboer; L Bertario; L Varesco; M L Bisgaard; J Mohr; R Fodde; P M Khan Journal: Gastroenterology Date: 1996-04 Impact factor: 22.682