“Data sharing was a core principle that led to the success of the Human Genome Project 20 years ago. Now scientists are struggling to keep information free….
So in 1996, the HGP [Human Genome Project] researchers got together to lay out what became known as the Bermuda Principles, with all parties agreeing to make the human genome sequences available in public databases, ideally within 24 hours — no delays, no exceptions.
Fast-forward two decades, and the field is bursting with genomic data, thanks to improved technology both for sequencing whole genomes and for genotyping them by sequencing a few million select spots to quickly capture the variation within. These efforts have produced genetic readouts for tens of millions of individuals, and they sit in data repositories around the globe. The principles laid out during the HGP, and later adopted by journals and funding agencies, meant that anyone should be able to access the data created for published genome studies and use them to power new discoveries….
The explosion of data led governments, funding agencies, research institutes and private research consortia to develop their own custom-built databases for handling the complex and sometimes sensitive data sets. And the patchwork of repositories, with various rules for access and no standard data formatting, has led to a “Tower of Babel” situation, says Haussler….”