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Privacy Protection, Personalized Medicine, and Genetic Testing

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  • Amalia R. Miller

    (Economics Department, University of Virginia, Charlottesville, Virginia 22904; Institute of Labor Economics (IZA), 53113 Bonn, Germany; National Bureau of Economic Research, Cambridge, Massachusetts 02138)

  • Catherine Tucker

    (National Bureau of Economic Research, Cambridge, Massachusetts 02138; and MIT Sloan School of Management, Massachusetts Institute of Technology, Cambridge, Massachusetts 02138)

Abstract

This paper explores how state genetic privacy laws affect the diffusion of personalized medicine, using data on genetic testing for cancer risks. State genetic privacy regimes employ and combine up to three alternative approaches to protecting patient privacy: Rules requiring that an individual is notified about potential privacy risks; rules restricting discriminatory usage of genetic data by employers or insurance companies; and rules limiting redisclosure without the consent of the individual. We find empirically that approaches to genetic and health privacy that give users control over redisclosure encourage the spread of genetic testing, but that notification deters individuals from obtaining genetic tests. We present some evidence that the latter reflects costs imposed on the supply of genetic testing by hospitals. We find no effects of state genetic antidiscrimination laws on genetic testing rates.

Suggested Citation

  • Amalia R. Miller & Catherine Tucker, 2018. "Privacy Protection, Personalized Medicine, and Genetic Testing," Management Science, INFORMS, vol. 64(10), pages 4648-4668, October.
    • Handle: RePEc:inm:ormnsc:v:64:y:2018:i:10:p:4648-4668
    DOI: 10.287/mnsc.2017.2858
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    Cited by:

    1. Bardey, David & De Donder, Philippe & Mantilla, César, 2019. "How is the trade-off between adverse selection and discrimination risk affected by genetic testing? Theory and experiment," Journal of Health Economics, Elsevier, vol. 68(C).
    2. Bleier, Alexander & Goldfarb, Avi & Tucker, Catherine, 2020. "Consumer privacy and the future of data-based innovation and marketing," International Journal of Research in Marketing, Elsevier, vol. 37(3), pages 466-480.
    3. Zhuo, Ran & Huffaker, Bradley & claffy, kc & Greenstein, Shane, 2021. "The impact of the General Data Protection Regulation on internet interconnection," Telecommunications Policy, Elsevier, vol. 45(2).
    4. Ronny Behrens & Natasha Zhang Foutz & Michael Franklin & Jannis Funk & Fernanda Gutierrez-Navratil & Julian Hofmann & Ulrike Leibfried, 2021. "Leveraging analytics to produce compelling and profitable film content," Journal of Cultural Economics, Springer;The Association for Cultural Economics International, vol. 45(2), pages 171-211, June.
    5. Tesary Lin, 2022. "Valuing Intrinsic and Instrumental Preferences for Privacy," Marketing Science, INFORMS, vol. 41(4), pages 663-681, July.
    6. Joseph R. Buckman & Idris Adjerid & Catherine Tucker, 2023. "Privacy Regulation and Barriers to Public Health," Management Science, INFORMS, vol. 69(1), pages 342-350, January.
    7. Andreea Avramescu & Richard Allmendinger & Manuel L'opez-Ib'a~nez, 2021. "Managing Manufacturing and Delivery of Personalised Medicine: Current and Future Models," Papers 2105.12699, arXiv.org.
    8. Miguel Godinho de Matos & Idris Adjerid, 2022. "Consumer Consent and Firm Targeting After GDPR: The Case of a Large Telecom Provider," Management Science, INFORMS, vol. 68(5), pages 3330-3378, May.
    9. Carl Benedikt Frey & Giorgio Presidente, 2024. "Privacy regulation and firm performance: Estimating the GDPR effect globally," Economic Inquiry, Western Economic Association International, vol. 62(3), pages 1074-1089, July.

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