Lewis, C., Skicon, H., Jones, R.: Living without a diagnosis: A parent’s experience. genet. test. mole. Biomarker 14(6), 807–815 (2010)
Google Scholar
Michaels-Igbokwe, C., McInnes, B., MacDonald, KV, et al.: (Non-)standardized testing: a diagnostic odyssey in children with rare genetic disorders in Alberta, Canada. genetics in medicine 23(2), 272–9 (2021)
Google Scholar
Oei, K., Hayeems, RZ, Ungar, WJ, Cohn, RD, Cohen, E.: Genetic testing in children in complex treatment programs. children 4(5), 42(2017)
Google Scholar
van Nimwegen, KJM, Schieving, JH, Willemsen, MAAP, et al.: Diagnostic pathways in complex pediatric neurology: a cost analysis. euro. J. Paediatr. New roll. 19(2), 233–239 (2015)
Google Scholar
Richards, J., Korgenski, EK, Srivastava, R., Bonkowsky, JL: Cost of the diagnostic odyssey in children with hereditary leukodystrophy. neurology 85(13), 1167–1170 (2015)
Google Scholar
Regier, DA, Weymann, D., Buchanan, J., Marshall, DA, Wordsworth, S.: Assessing health and non-health outcomes through next-generation sequencing: approaches, challenges, and solutions. value health 21(9), 1043~1047(2018)
Google Scholar
Phillips, KA, Deverka, PA, Marshall, DA, et al.: Methodological challenges in assessing the economic value of next-generation sequencing testing: challenges are many, but solutions are not enough. value health 21(9), 1033~1042(2018)
Google Scholar
Christensen, KD, Phillips, KA, Green, RC, Dukhovny, D.: Analysis of the costs of genome sequencing: lessons learned from the MedSeq project. value health 21(9), 1054–1061 (2018)
Google Scholar
Regier, DA, Friedman, JM, Makela, N., Ryan, M., Marra, CA: Evaluating the benefits of diagnostic testing for genetic causes of idiopathic developmental disorders: Willingness to pay for families of affected children. Clean. genet. 75(6), 514–521 (2009)
Google Scholar
Marshall, DA, MacDonald, KV, Heidenreich, S., et al.: The value of diagnostic testing for parents of children with rare genetic disorders. genet. Med. 21(12), 2798-2806 (2019)
Google Scholar
Lewis, MA, Stine, A., Paquin, RS, et al.: Parental preferences for genome sequencing for nonmedically amenable conditions in children: a discrete choice experiment. genet. Med. 20(2), 181–189 (2018)
Google Scholar
Peyron, C., Pélissier, A., Béjean, S.: Favoring heterogeneity when it comes to whole genome sequencing. A discrete choice experiment with parents of children with rare genetic diseases. Soc Sci Med 214125–132(2018)
Google Scholar
Goranitis, I., Best, S., Christodoulou, J., Boughtwood, T., Stark, Z.: Preferences and values for rapid genomic testing in critically ill infants and children: a discrete choice experiment. euro. J. Hmm. genet. 29(11), 1645~1653(2021)
Google Scholar
Bridges, JFP, de Bekker-Grob, EW, Hauber, B., et al.: A roadmap for increasing the usefulness and impact of patient preference research in health-related decision-making: a best practices report from the ISPOR Task Force. value health 26(2), 153–162 (2023)
Google Scholar
Epstein, RM, Peters, E.: Beyond information: Exploring patient preferences. Zama 302(2), 195–197 (2009)
Google Scholar
Epstein, RM, Fiscella, K., Lesser, CS, Stange, KC: Why the country needs a policy push for patient-centered health care. Health Related (Millwood) 29(8), 1489~1495 (2010)
Google Scholar
Drummond, MF, Sculpher, MJ, Torrance, GW, O’Brien, BJ, Stoddart, GL: Methods for economic evaluation of health care programs. 3rd edition New York: Oxford University Press (2005)
McIntosh, E., Donaldson, C., Ryan, M.: Recent advances in cost-benefit analysis methods in healthcare. A combination of art and science. pharmacoeconomics 15(4), 357–367 (1999)
Google Scholar
McIntosh, E.: Using discrete choice experiments within a cost-benefit analysis framework: Some considerations. pharmacoeconomics 24855–868 (2006)
Google Scholar
Vass, C., Boeri, M., Karim, S., et al.: Explaining preference heterogeneity in discrete choice experiments: ISPOR Special Interest Group report. value health 25(5), 685–694 (2022)
Google Scholar
Lancsar, E., Louviere, J.: Conducting individualized choice experiments to inform medical decision-making: A user’s guide. pharmacoeconomics 26661–677 (2008)
Google Scholar
Grosse, SD, Wordsworth, S., Payne, K.: Economic methods for assessing the value of genetic testing results: beyond cost-effectiveness analysis. genet. Med. 10(9), 648–654 (2008)
Google Scholar
Buchanan, J., Wordsworth, S.: Assessing outcomes associated with genome sequencing: a roadmap for future research. Pharmacoeconomics – Open 3(2), 129–132 (2019)
Google Scholar
Hole, AR, Kolstad, JR: Mixed logit estimates of willingness to pay: Comparing preference and WTP spatial models using data from a health-related choice experiment. empire. ikon. 42(2), 445–469 (2012)
Train, K., Weeks, M.: Discrete choice models in preference space and willingness-to-pay space. In: Alberini, A, Scarpa, R. (eds.) Application of simulation methods in environmental and resource economics: Springer Netherlands (2005).
Daly, A., Hess, S., Train, K.: Finite moment guarantees for willingness to pay in random coefficient models. transit 39(1), 19~31 (2012)
Czajkowski, M., Budziński, W.: Simulation errors in maximum likelihood estimation of discrete choice models. Journal of Choice Modeling 3173–85 (2019)
Google Scholar
Small, KA, Rosen, HS: Applied welfare economics using discrete choice models. econometrics 49(1), 105–130 (1981)
Google Scholar
Lancsar, E., Savage, E.: Deriving welfare measures from individual choice experiments: Inconsistencies between current methods and random utility and welfare theory. Health economy. 13901–907 (2004)
Google Scholar
Ryan, M.: Deriving welfare measures from discrete choice experiments: Comments on Lancsar and Savage (1). health economy 13909-912(2004)
Google Scholar
Khajavi, S.: Optimal peak load pricing, investment and service levels on urban streets – a numerical example. Transfer. resolution. suggestion 8077–14 (1981)
Google Scholar
Tsiplova, K., Zur, RM, Marshall, CR, et al.: Microcosts and cost-outcome analysis of clinical genomic testing strategies for autism spectrum disorders. genet. Med. 19(11), 1268~1275(2017)
Google Scholar
Abbott, M., McKenzie, L., Moran, BVG, et al.: Continue the sequence? Toward an economic evaluation of whole genome sequencing for rare disease diagnosis in Scotland. J. Community Genet. 13(5), 487–501 (2022)
Google Scholar
Tinelli, M., Ryan, M., Bond, C.: What, who, when? Integrating discrete choice experiments into economic evaluations. Health economy. rotation. 6(1), 31 (2016)
Google Scholar
Sargazi, N., Takian, A., Daroudi, R., et al.: Cost-benefit analysis of human papillomavirus vaccine in Iran. prevention journal 43(6), 841–857 (2022)
Google Scholar
Keller, E., Botha, W., Chambers, GM: Does in vitro fertilization (IVF) treatment provide good value for money? Cost-benefit analysis. Front. Globe. women’s health 4971553(2023)
Google Scholar
Van Der Pol, M., Shiell, A., Au, F., Jonhston, D., Tough, S.: Eliciting individual preferences for health care: a case study in perinatal care. health expectations 13(1), 4~12(2010)
Google Scholar
Mühlbacher, A.C., Sadler, A.: The stochastic efficiency frontier: a framework for cost-effectiveness analysis implemented for hepatitis C treatment options in Germany. value health 20(2), 266–272 (2017)
Google Scholar
Statistics Canada: Income Highlights Table, Census 2016. Ottawa, Ontario: Statistics Canada (2016).