More than 70 medical, research and advocacy organizations active in 41 countries and including the National Institutes of Health announced Wednesday that they had agreed to create an organized way to share genetic and clinical information. http://www.nytimes.com/2013/06/06/health/global-partners-agree-on-sharing-trove-of-genetic-data.html?ref=world
Millions more people are expected to get their genes decoded in coming years, and the fear is that this avalanche of genetic and clinical data about people and how they respond to treatments. “We are strong supporters of this global alliance,” In just the past few years, the price of determining the sequence of genetic letters that make up human DNA has dropped a millionfold. In the next few years researchers expect that millions of people will have their genomes sequenced. “The question is whether and how we make it possible to learn from these data as they grow, in a manner that respects the autonomy and privacy choices of each participant,” But there are no agreed-upon standards for representing genetic data or sharing them. And there are no common procedures for assuring that patients consent to sharing their information.
On Jan. 28, 50 leading researchers from eight countries met and agreed on the need for a global alliance. The group, which included ethicists and disease advocates, stressed that because individual study subjects had to be able to decide whether to share their genetic and clinical information, the system for data sharing had to include ways to track and manage these permissions.