July 4, 2013
The cost of genome sequencing has fallen a million fold, and it is becoming more and more affordable and accessible for the average person. Even though the advances in genome sequencing have provided a wealth of knowledge, the data collected and studied are mostly disorganized and dispersed. Experts contend that there are no agreed-upon standards for representing genetic data or sharing them. Additionally there is currently no common procedures for assuring that patients consent to sharing their information.
To better serve the patient, research and clinical community, fifty representatives from eight countries met earlier this year to discuss how they can work collaboratively so that there is optimal use of the data generated. From this meeting, the delegation decided to develop the global alliance which will develop standards and policies to encourage data-sharing. The alliance also hopes to tackle other ethical issues that have cropped up due to the genomic revolution, such privacy and informed-consent concerns that may prevent researchers from sharing data by utilizing cloud-computing platforms and analysis tools. The Global Alliance plans to base their model on the World Wide Web Consortium, which established HTML standards leading to an unprecedented growth of web pages across the Internet and also the Human Genome Project for its rapid development. The consortium now consists of more than 70 institutions in 13 countries with International Rare Disease Research Consortium (IRDiRC) as one of its members.