REGULATORY · MARKET STRUCTURE · UK
Researchers post UK Biobank health records online
Change
Researchers using UK Biobank data posted confidential health records online on dozens of occasions, including datasets covering hundreds of thousands of participants.
Why it matters
UK Biobank holds medical and genetic records for 500,000 volunteers. Datasets were exposed online on dozens of occasions. One exposed dataset contained hospital diagnoses and diagnosis dates for about 413,000 participants, plus sex and month and year of birth. Exposed files range from isolated patient IDs or small test results to extensive diagnosis records. Files do not include names or addresses.
Implications
- • Custodians cannot treat exposed datasets as maintaining restricted-access confidentiality for affected records.
- • Researchers requiring assured participant anonymity are constrained from using exposed records in analyses that depend on protected data.
- • Exposed files include diagnosis dates linked to demographic fields, expanding the set of identifiable medical information available externally.
- • At least one exposed record set allowed pinpointing of an individual volunteer's hospital diagnoses.
Who is affected
- • Data custodians for Biobank datasets
- • Research teams with controlled-access to participant-level health data
- • Researchers conducting studies that require protected participant records
- • Study participants (volunteers)
Source
Topics
Law & Public Safety Data Privacy Science & Research Genetics & Genomics Health & Medicine Medical Research