https://slowkow.com/categories/genomics/ Recent content in Genomics on Kamil Slowikowski Hugo -- gohugo.io en kslowikowski@gmail.com (Kamil Slowikowski) kslowikowski@gmail.com (Kamil Slowikowski) © 2026 Kamil Slowikowski Tue, 22 Sep 2026 00:00:00 +0000 https://slowkow.com/notes/open-genomics/ Tue, 22 Sep 2026 00:00:00 +0000 kslowikowski@gmail.com (Kamil Slowikowski) https://slowkow.com/notes/open-genomics/ <p>Most human genomics data is locked behind controlled access. To analyze a tumor genome from dbGaP or EGA, you apply to a data access committee, sign an agreement, wait weeks or months, and then work only in the places the agreement allows. These rules exist for good reasons. But they slow everyone down, and they apply even when the person who donated the data would have happily given it away.</p> <p>Some people have given it away. A few patients, and a few institutions working with them, have released individual-level sequencing data that anyone can download and use for any purpose.</p> <p>I think the field would benefit from a truly open database of voluntarily contributed genomics data with no usage restrictions. The idea is not new, and it is not impossible. It has already been done several times. What is missing is organization.</p> <p>This post collects the examples I know about, so I can reason about what exists, and so you can see it too. Not everything here is truly open, but everything is related.</p>