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English – The Conversation | UK Biobank records listed for sale in China: why open data might be the answer by Simon Kolstoe, Associate Professor of Bioethics, University of Portsmouth
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The UK Biobank chief executive recently warned participants that researchers who had legitimately accessed the biobank’s vast health‑data set were trying to sell portions of it on a Chinese website, a move that, while not a hack, exposed the limits of relying on researcher honesty rather than technical safeguards. The incident highlights a broader dilemma: once data exist, they can be leaked—whether accidentally, dishonestly, or via sophisticated AI tools that can de‑anonymise “anonymous” records—making legal protections and secure‑research environments insufficient in a globally connected world. While privacy concerns are especially acute for personal finance or contact details, health data offer profound societal benefits when aggregated, as evidenced by the biobank’s 18,000+ publications and use by 22,000 researchers in over 60 countries. The author argues that, given the inevitability of data exposure, the focus should shift from attempting to keep data sealed to treating large‑scale health datasets as a public good, establishing robust governance and international agreements to ensure ethical and beneficial use rather than futilely trying to block access.
Read more: https://theconversation.com/uk-biobank-records-listed-for-sale-in-china-why-open-data-might-be-the-answer-281388
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