Open-access genomics database causes hand-wringing in U.K. - FierceBiotechIT
Open and closed systems have divided the tech sector for years, with people taking deeply entrenched positions in Apple ($AAPL) versus Android and Linux versus Windows debates. And when this philosophical split is applied to genomics, the stakes ratchet up significantly, as the U.K. found this week. The debate was sparked by the creation of Personal Genome Project UK, a local spinoff of an initiative that began in the U.S. back in 2005. Personal Genome Project UK wants to sequence the genomes of 100,000 volunteers, the exact same goal of the government-owned firm Genomics England. However, while Genomics England plans to hide its data behind the National Health Service (NHS) firewall and sell access to researchers, Personal Genome Project will make its results freely available online. Applying an open-access model to genetic information has made some people uneasy. 'To put 100,000 genomes on the web so anyone can download them and use them is more than creepy. I wouldn't dream of doing it. You don't know where that's going to get to, we don't know enough about this yet,' Cambridge University computer security expert Ross Anderson told The Guardian. Anderson advised people to think hard before signing up to the project, particularly given the potential for future scientific advances to infer ever more about a person from their genetic information. Personal Genome Project UK admits anonymization is impossible and is very open about the potential risks. Worst-case scenarios include employment or insurance being affected by revelations, but the team behind the project thinks the benefits outweigh the risks and hopes 100,000 Brits agree. By acknowledging the risk of re-identification--and making participants complete a 19-page consent form--the project thinks it can ensure everyone who submits genetic material is willing to share their data publicly. If successful, the project--which involves the Wellcome Trust Sanger Institute and Illumina ($ILMN)--could prove a headache for Genomics England, which must persuade people its data is better than the free alternative."