Open data is key to genomics research — if the information can be kept safe

In April, de-identified biomedical data for 500,000 UK Biobank participants appeared for sale on an e-commerce platform owned by Alibaba, a global technology company based in Hangzhou, China. As soon as the listings were discovered, the UK Biobank and Alibaba worked together with the UK and Chinese governments to remove them before any sales occurred. The UK Biobank temporarily suspended access to its research platform , tightened up its monitoring of the data being exported from the platform and imposed bans on the academic institutions to which the data had originally been released. UK Biobank breach prompts the field of genomics to rethink open science A separate data breach occurred in the United States. Over the past few years, a group of researchers has bypassed restrictions to obtain de-identified data from more than 20,000 children taking part in the Adolescent Brain Cognitive Development Study — a project funded by the US National Institutes of Health (NIH). The researchers used the data to promote white supremacist views. The NIH then strengthened access requirements, added mandatory training on responsible data use and implemented compliance checks on scientists seeking to use the data. Such breaches affect the entire research community. They could make people wary of joining studies. Meanwhile, institutions might tighten up access to their databases and reduce their reliance on international data sets. …