Privacy Protection, Personalized Medicine, and Genetic Testing

Amalia Miller and Catherine Tucker ()
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Catherine Tucker: National Bureau of Economic Research, Cambridge, Massachusetts 02138; and MIT Sloan School of Management, Massachusetts Institute of Technology, Cambridge, Massachusetts 02138

Management Science, 2018, vol. 64, issue 10, 4648-4668

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.

Keywords: healthcare; treatment; information systems; application contexts/sectors; regulation (search for similar items in EconPapers)
Date: 2018
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Citations: View citations in EconPapers (11)

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Persistent link: https://EconPapers.repec.org/RePEc:inm:ormnsc:v:64:y:2018:i:10:p:4648-4668

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