"Big Data, Big Headaches: Cultivating Public Trust in an Age of Unconsented Access to Identifiable Data"
Dr. Barbara Evans
University of Houston Law Center
"New Genetic Re-identification Methods and Implications for Privacy"
Dr. Arvind Narayanan
"Does Publishing a Predictive Model for Precision Medicine Put Patient Privacy at Risk?"
Dr. Matt Fredrikson
Carnegie Mellon University
With the advent of high-throughput methods in biomedical research, the drive for precision medicine, and the advances in computational methods that foster "big data science," many commentators have expressed concern about how to promote biomedical science while respecting people's privacy. Biomedical research data may be subject to different privacy laws and regulations depending on the type of institution holding or using the data, the type of data, who funds the research, the state in which the research is conducted, and other factors. Biomedical researchers are generally required to protect patient and research participant privacy, while at the same time researchers are encouraged or explicitly required to share data with the scientific community. In some cases privacy protections can impede science, but in some cases data sharing can expose research participants or patients to informational risk. This half-day symposium will examine legal, policy, and technical issues at the intersection of data privacy and data science.