"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."
"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. Such responses are understandable - but they will hamper science. Genomics research requires diversity, integration and interoperability. To progress, the field must prioritize secure sharing, standardization across platforms and meaningful integration of data sets on a global scale."
De-identified biomedical data for 500,000 UK Biobank participants appeared for sale on an Alibaba-owned e-commerce platform. The UK Biobank and Alibaba worked with UK and Chinese governments to remove the listings before any sales occurred. The UK Biobank temporarily suspended access to its research platform, increased monitoring of exported data, and banned the academic institutions that originally received the data. In the United States, researchers bypassed restrictions to obtain de-identified data for more than 20,000 children in the Adolescent Brain Cognitive Development Study and used it to promote white supremacist views. The NIH strengthened access requirements, required training on responsible data use, and added compliance checks. These incidents can reduce participation and prompt institutions to restrict access, slowing science. Genomics progress depends on secure sharing, standardization, and meaningful global integration of data sets.
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