DNA and other confidential health data from half a million people who volunteered for a massive British health study were offered for sale online in China after a data breach last week, reports MedPage Today.
The British Government announced that the information from the UK Biobank database was found listed for sale on the website Alibaba, but names, addresses, contact details, or telephone numbers were not included, according to Technology Minister Ian Murray.
Murray said he could not give a complete guarantee that nobody could be identified, as the data could include gender, age, month and year of birth, socioeconomic status, lifestyle habits and measures from biological samples.
Murray said the information had been legitimately downloaded by three research institutions in China, who have now had access revoked.
He added that the breach was an “unacceptable abuse of the UK Biobank charity’s data and abuse of the trust that participants expect when sharing the data for research purposes”, and that the government was investigating out how it happened.
Those who agreed to make all their health-related data available for research were aged 40 to 69 when they joined the study from 2006-2010. Participants provide detailed information about their lifestyle via online questionnaires, and consented to providing data from their health records and related information.
Some also provide body scans with medical imaging equipment or additional blood, urine, and saliva samples, and some wear physical activity monitors or heart health monitors.
All of the information is used to assess how diseases develop.
Murray said no purchases had been made and that the data have now been taken down.
UK Biobank is the world’s most comprehensive dataset of biological, health, and lifestyle information, and has been used to achieve improvements in detection and treatment of dementia, cancers, and Parkinson’s disease.
It can be used by scientists around the world for research deemed to be in the public interest. Data from it have been cited in more than 18 000 peer-reviewed scientific papers, including on major causes of ill health.
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