Why Should a Genome Be Protected? Ethical, Legal, and Security Challenges in the Protection of Genomic Data

Abstract

Why should a genome be protected? Because it contains our most private data! A genome contains an organism’s set of genetic material (DNA and, in viruses, RNA), and it contains all genes and non-coding sequences. The structure of DNA was described by Watson and Crick in 1953, but the first studies were conducted a century earlier by Miescher, who described the structure and chemical composition of the nucleus. The first action aimed at securing the results of genetic research was the creation of databases for the results obtained using genetic fingerprinting technology. The discovery of the sequencing method and the introduction of the polymerase chain reaction laid the foundations for understanding the genome’s function. Automated DNA sequencing proved to be hundreds of times faster than traditional methods, thus reducing the cost and time of genome analyses. Thousands of genomic data points are stored in private and governmental databases. The security of patients’ genomic data must be ensured by protecting it from unauthorized use while, at the same time, enabling research for the sake of public health. The falling prices of genome sequencing and the increasing availability of commercial sequencing for the public could result in ethical problems and undermine the safety of personal information.