This research will study how state regulation protecting the privacy of genetic information affects the market for genetic tests. It will exploit variation in the timing of different state laws as a natural experiment and compare changes in genetic testing outcomes over time between states that adopt privacy protections and states that do not. The outcomes of interest are the availability of genetic testing and use of genetic tests by adults. The research will also study the effects of genetic privacy protection on public health through preventive care, such as cancer screening and surgical interventions, as well as health outcomes.
The results of this research can provide empirical evidence on the impact of different privacy rules on technology diffusion in general, and on genetic privacy in particular. As medical science advances, the uses of genetic information will increase, in ways that could be both beneficial and harmful to individuals. Clinical applications of genetic information may improve public health by targeting preventive care and interventions where they will be more effective. At the same time, as more links are uncovered between genes and personality traits and future health risks, individuals may suffer from discrimination based on their genetic information.
Privacy protection is the main policy tool available to limit those harms and optimal policy will balance the risks and benefits. This research will provide the first empirical evidence on the effect of different types of privacy safeguards. Since the question of privacy protection is not a binary, all-or-nothing, choice, it is important to understand what features of privacy rules are most beneficial from the view of consumers and which are most costly to producers. The study will therefore explore the separate and joint effects of different provisions within privacy laws to identify policies that are most favorable to technology diffusion.
This research studies how state regulation protecting the privacy of genetic information affects the market for genetic tests. It exploits a natural experiment in the form of the timing of different state laws to study how privacy protection affects the availability of genetic testing and use of genetic testing for cancer screening by adults. Intellectual Merit The genetic revolution has unlocked new tools for disease prevention and treatment. However, the diffusion of genetic testing technology has been slow and genetic testing rates for adults remain extremely low overall. Testing rates are low even for established tests, such as BRCA1 and BRCA2 genetic mutations, which predict breast and ovarian cancer risk, and among populations with elevated cancer risks. One reason that has been proposed to explain low testing rates is that people are concerned that the information may harm them in future market interactions, such as employment or purchasing insurance (health, life, disability, or long-term care). With the increased digitization of medical information, individuals may be particularly concerned about genetic information being a persistent part of their digital medical record. State and federal lawmakers have started to address genetic privacy by implementing a range of privacy protections for personal genetic information. These new rules, specific to genetic information, supplement existing state and federal laws protecting the privacy of personal health information. The laws affect the collection, distribution and use of genetic information. They typically restrict any or certain parties (such as hospitals, insurers or employers) from carrying out particular actions without consent from the individual being tested. State genetic privacy laws take three alternative approaches to protecting patient privacy: requiring informed consent on the part of the individual; restricting discriminatory usage of genetic data by employers, health care providers or insurance companies; or limiting redisclosure without the consent of the individual. It is not obvious how these different forms of legal safeguards will affect the diffusion of genetic testing facilities or the use of genetic tests. On the one hand, these safeguards may provide necessary reassurance to patients that their genetic information will not hurt them in future market interactions. On the other hand, the laws may impose additional costs to suppliers of genetic tests and limit the value to them from generating the analysis. Therefore the impact of these privacy rules on the performance of genetic testing markets is theoretically ambiguous. It is also not clear whether all such safeguards will have similar effects. This research is the first to evaluate their impact empirically. We find empirically that approaches to genetic and health privacy that give users control over redisclosure encourage the spread of genetic testing, but that the informed consent approach 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 or federal genetic anti-discrimination laws on genetic testing rates. This research contributes to a growing research area in economics and management that explores the effects of privacy regulation and disclosure risks on the diffusion and value of new advances in information technology. It also contributes to the literatures in economics and public health that study markets for preventive health services and that explore the factors that influence individual decisions to invest in screening and disease prevention. Broader Impacts The results of this research can provide empirical evidence on the impact of different privacy rules on technology diffusion in general, and on genetic privacy in particular. As medical science advances, the uses of genetic information will increase, in ways that could be both beneficial and harmful. Clinical applications of genetic information may improve public health by targeting preventive care and interventions where they will be more effective. At the same time, as more links are uncovered between genes and personality traits and future health risks, individuals may suffer from discrimination based on their genetic information. Privacy protection is the main policy tool available to limit those harms and optimal policy will balance the risks and benefits. This research provides the first empirical evidence on the effect of different types of privacy safeguards. Since the question of privacy protection is not a binary, all-or-nothing, choice, it is important to understand what features of privacy rules are most beneficial from the view of consumers and which are most costly to producers. The study therefore measured the separate effects of different provisions within privacy laws to identify policies that are most favorable to technology diffusion.
