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Preference heterogeneity with respect to whole genome sequencing. A discrete choice experiment among parents of children with rare genetic diseases

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  • Peyron, Christine
  • Pélissier, Aurore
  • Béjean, Sophie

Abstract

The information to which whole genome sequencing (WGS) provides access raises questions about its disclosure to patients. The literature focused on the nature of findings, shows patients share the same expectations while evoking possible heterogeneity. Our objective is to test this hypothesis of preference heterogeneity with respect to the disclosure of results from WGS by means of a discrete choice experiment (DCE).

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  • Peyron, Christine & Pélissier, Aurore & Béjean, Sophie, 2018. "Preference heterogeneity with respect to whole genome sequencing. A discrete choice experiment among parents of children with rare genetic diseases," Social Science & Medicine, Elsevier, vol. 214(C), pages 125-132.
  • Handle: RePEc:eee:socmed:v:214:y:2018:i:c:p:125-132
    DOI: 10.1016/j.socscimed.2018.08.015
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    1. Regier, Dean A. & Ryan, Mandy & Phimister, Euan & Marra, Carlo A., 2009. "Bayesian and classical estimation of mixed logit: An application to genetic testing," Journal of Health Economics, Elsevier, vol. 28(3), pages 598-610, May.
    2. Wang, Catharine & Gonzalez, Richard & Merajver, Sofia D., 2004. "Assessment of genetic testing and related counseling services: current research and future directions," Social Science & Medicine, Elsevier, vol. 58(7), pages 1427-1442, April.
    3. Mickael Bech & Dorte Gyrd‐Hansen, 2005. "Effects coding in discrete choice experiments," Health Economics, John Wiley & Sons, Ltd., vol. 14(10), pages 1079-1083, October.
    4. Hole, Arne Risa, 2008. "Modelling heterogeneity in patients' preferences for the attributes of a general practitioner appointment," Journal of Health Economics, Elsevier, vol. 27(4), pages 1078-1094, July.
    5. Joanna Coast & Hareth Al‐Janabi & Eileen J. Sutton & Susan A. Horrocks & A. Jane Vosper & Dawn R. Swancutt & Terry N. Flynn, 2012. "Using qualitative methods for attribute development for discrete choice experiments: issues and recommendations," Health Economics, John Wiley & Sons, Ltd., vol. 21(6), pages 730-741, June.
    6. Hensher,David A. & Rose,John M. & Greene,William H., 2015. "Applied Choice Analysis," Cambridge Books, Cambridge University Press, number 9781107465923.
    7. Louviere, Jordan J. & Lancsar, Emily, 2009. "Choice experiments in health: the good, the bad, the ugly and toward a brighter future," Health Economics, Policy and Law, Cambridge University Press, vol. 4(4), pages 527-546, October.
    8. Michael Clark & Domino Determann & Stavros Petrou & Domenico Moro & Esther Bekker-Grob, 2014. "Discrete Choice Experiments in Health Economics: A Review of the Literature," PharmacoEconomics, Springer, vol. 32(9), pages 883-902, September.
    9. Greene, William H. & Hensher, David A., 2003. "A latent class model for discrete choice analysis: contrasts with mixed logit," Transportation Research Part B: Methodological, Elsevier, vol. 37(8), pages 681-698, September.
    10. Emily Lancsar & Jordan Louviere, 2006. "Deleting ‘irrational’ responses from discrete choice experiments: a case of investigating or imposing preferences?," Health Economics, John Wiley & Sons, Ltd., vol. 15(8), pages 797-811, August.
    11. Aurore Pélissier & Christine Peyron & Sophie Béjean, 2016. "Next-generation sequencing in clinical practice: from the patients' preferences to the informed consent process," Post-Print hal-01549997, HAL.
    12. Peter J. Neumann & Joshua T. Cohen & James K. Hammitt & Thomas W. Concannon & Hannah R. Auerbach & ChiHui Fang & David M. Kent, 2012. "Willingness‐to‐pay for predictive tests with no immediate treatment implications: a survey of US residents," Health Economics, John Wiley & Sons, Ltd., vol. 21(3), pages 238-251, March.
    13. Kelvin J. Lancaster, 1966. "A New Approach to Consumer Theory," Journal of Political Economy, University of Chicago Press, vol. 74(2), pages 132-132.
    14. Jorien Veldwijk & Mattijs S Lambooij & Esther W de Bekker-Grob & Henriëtte A Smit & G Ardine de Wit, 2014. "The Effect of Including an Opt-Out Option in Discrete Choice Experiments," PLOS ONE, Public Library of Science, vol. 9(11), pages 1-9, November.
    15. Determann, Domino & Lambooij, Mattijs S. & de Bekker-Grob, Esther W. & Hayen, Arthur P. & Varkevisser, Marco & Schut, Frederik T. & Wit, G. Ardine de, 2016. "What health plans do people prefer? The trade-off between premium and provider choice," Social Science & Medicine, Elsevier, vol. 165(C), pages 10-18.
    16. Hall, Jane & Fiebig, Denzil G. & King, Madeleine T. & Hossain, Ishrat & Louviere, Jordan J., 2006. "What influences participation in genetic carrier testing?: Results from a discrete choice experiment," Journal of Health Economics, Elsevier, vol. 25(3), pages 520-537, May.
    17. Daly, Andrew & Dekker, Thijs & Hess, Stephane, 2016. "Dummy coding vs effects coding for categorical variables: Clarifications and extensions," Journal of choice modelling, Elsevier, vol. 21(C), pages 36-41.
    18. James Buchanan & Sarah Wordsworth & Anna Schuh, 2016. "Patients’ Preferences for Genomic Diagnostic Testing in Chronic Lymphocytic Leukaemia: A Discrete Choice Experiment," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 9(6), pages 525-536, December.
    19. Scott, Anthony, 2002. "Identifying and analysing dominant preferences in discrete choice experiments: An application in health care," Journal of Economic Psychology, Elsevier, vol. 23(3), pages 383-398, June.
    20. Severin, Franziska & Hess, Wolfgang & Schmidtke, Jörg & Mühlbacher, Axel & Rogowski, Wolf, 2015. "Value judgments for priority setting criteria in genetic testing: A discrete choice experiment," Health Policy, Elsevier, vol. 119(2), pages 164-173.
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    1. Liu, Yun & Kong, Qingxia & de Bekker-Grob, Esther W., 2019. "Public preferences for health care facilities in rural China: A discrete choice experiment," Social Science & Medicine, Elsevier, vol. 237(C), pages 1-1.

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