Genomic Privacy and the Rise of a New Research Community

Recent breakthroughs in whole genome sequencing (WGS) have laid the foundations to improve modern healthcare and attain a better understanding of genetic features, as well as their relation to diseases. The increased affordability of WGS prompts institutions worldwide to build large datasets of digitized genomes, often obtained from donors, and make them available for different research purposes. It also enables private individuals who are motivated by medical reasons or personal curiosity to have their genome sequenced, thus breeding a novel market for consumer-oriented genomic tests. This progress, however, also raises alarming privacy and ethical issues: genomes not only uniquely and irrevocably identify their owner but also contain treasure troves of personal and sensitive information.