The era of personal genomics, where genetic information is ubiquitously available for research, clinical practice or personal curiosity, is quickly approaching. At the same time, there is a growing concern of genetic privacy and the existing educational resources are focused mostly on legal, regulatory or ethical issues in personal genomics. There is a substantial gap in educating genetic privacy and this project sets the following goals: (1) build the education framework for genetic privacy protection; (2) design genetic privacy course modules to be used in Computer Science or Bioinformatics; and (3) develop hands-on projects on privacy infringement and protection.
The project provides a comprehensive set of education strategies in genetic privacy that are integrated with interdisciplinary research in the areas of data privacy and genetics/genomics. The integrative education framework for protecting genetic privacy for both genomic study participants and regular individuals with personal genomes available will utilize differential privacy and Bayesian network based attack modeling techniques. The course modules will include topics on genomic data analysis, genetic privacy breaching techniques, ethics, regulations, laws and pertinent techniques about genetic privacy protection. The project will develop a set of course projects that can be customized for the targeted audience.
The project will develop and propagate open standards, technical guidelines, and education opportunities to promote the share and openness of genomic data for social good. A public web portal will serve as a hub for sharing tools, documentation, course materials, and tutorials. Through outreach to high school students and general public, the project expects to increase awareness of issues related to genetic privacy in managing and interpreting personal genomes.