Millions of people today have access to their personal genomic information. Direct-to-consumer services and integration with other “big data” increasingly commoditize what was rightly celebrated as a singular achievement in February 2001 when the first draft human genomes were published. But such remarkable technical and scientific progress has not been without its share of missteps and growing pains. Science invited the experts below to help explore how we got here and where we should (or ought not) be going. —Brad Wible
An ethos of rapid data sharing, more relevant than ever
By Kathryn Maxson Jones and Robert Cook-Deegan
Sharing data can save lives. The “Bermuda Principles” for public data disclosure are a fundamental legacy of producing the first human reference DNA sequence during the Human Genome Project (HGP) (1). Since the 1990s, these principles have become a touchstone for open science.
In February 1996, the leaders of the HGP gathered in Bermuda to discuss how to scale up production for a human reference DNA sequence. With some caveats, the consortium agreed that all sequencing centers would release their... see more