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It's what's expected: genetic testing for inherited conditions, CHERE Discussion Paper No 46

Author

Listed:
  • Marion Haas

    (CHERE, University of Technology, Sydney)

  • Jane Hall

    (CHERE, University of Technology, Sydney)

  • Richard De Abreu Lourenco

Abstract

The development of new genetic technology brings with it responsibility for evaluating the effectiveness and efficiency of testing programs, including gaining an understanding of the value of information. This study examined the factors individuals took into account when making decisions about having a genetic test for Tay Sachs Disease. Fifteen people participated in an in-depth interview as they attended a clinic for genetic testing. A thematic analysis of the data was undertaken. Participants were most influenced to have testing by personal factors: e.g. ethnic background and desire to have children. Disease characteristics were also important. The results informed the development of a Stated Preference Discrete Choice (SPDCM) experiment. Participants were motivated to have testing by a need for reassurance and certainty. Thus, information was an important outcome for them. The results of the SPDCM experiment indicate that participants valued information positively thus providing support for the findings of the qualitative research.

Suggested Citation

  • Marion Haas & Jane Hall & Richard De Abreu Lourenco, 2001. "It's what's expected: genetic testing for inherited conditions, CHERE Discussion Paper No 46," Discussion Papers 46, CHERE, University of Technology, Sydney.
    • Handle: RePEc:her:chedps:46
    as

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    File URL: http://www.chere.uts.edu.au/pdf/dp46.pdf
    File Function: First version, 2001
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    References listed on IDEAS

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    1. Press, Nancy & Browner, C. H., 1997. "Why women say yes to prenatal diagnosis," Social Science & Medicine, Elsevier, vol. 45(7), pages 979-989, October.
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    Cited by:

    1. 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.
    2. Caroline Vass & Dan Rigby & Katherine Payne, 2017. "The Role of Qualitative Research Methods in Discrete Choice Experiments," Medical Decision Making, , vol. 37(3), pages 298-313, April.

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    More about this item

    Keywords

    Genetic testing; Tay Sachs disease; Discrete choice experiment;
    All these keywords.

    JEL classification:

    • I11 - Health, Education, and Welfare - - Health - - - Analysis of Health Care Markets

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