Privacy Protection and Genetic Testing

Rand Corporation, Santa Monica CA

Investigators

Abstract

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.