When half a million participants signed up to UK Biobank, a major health database containing genetic and medical information from volunteers, they thought they were giving up access to their data to help improve academic research and to unlock new insights into how we get ill — and, crucially, how we can prevent it. So it was a shock when researchers discovered attempts to sell data on third-party platforms, including Chinese online marketplaces. The controversy has raised broader concerns about consent, oversight, and the blurred line between public interest research and commercial use.
UK Biobank’s data wasn’t directly identifiable, but critics…
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