Shanti Das
The Guardian
Originally poste 12 Nov 23
Sensitive health information donated for medical research by half a million UK citizens has been shared with insurance companies despite a pledge that it would not be.
An Observer investigation has found that UK Biobank opened up its vast biomedical database to insurance sector firms several times between 2020 and 2023. The data was provided to insurance consultancy and tech firms for projects to create digital tools that help insurers predict a person’s risk of getting a chronic disease. The findings have raised concerns among geneticists, data privacy experts and campaigners over vetting and ethical checks at Biobank.
Set up in 2006 to help researchers investigating diseases, the database contains millions of blood, saliva and urine samples, collected regularly from about 500,000 adult volunteers – along with medical records, scans, wearable device data and lifestyle information.
Approved researchers around the world can pay £3,000 to £9,000 to access records ranging from medical history and lifestyle information to whole genome sequencing data. The resulting research has yielded major medical discoveries and led to Biobank being considered a “jewel in the crown” of British science.
Biobank said it strictly guarded access to its data, only allowing access by bona fide researchers for health-related projects in the public interest. It said this included researchers of all stripes, whether employed by academic, charitable or commercial organisations – including insurance companies – and that “information about data sharing was clearly set out to participants at the point of recruitment and the initial assessment”.
Here is my summary:
Private health data donated by over half a million UK citizens for medical research has been shared with insurance companies, despite a pledge that it would not be used for this purpose. The data, which includes genetic information, medical diagnoses, and lifestyle factors, has been used to develop digital tools that help insurers predict a person's risk of getting a chronic disease. This raises concerns about the privacy and security of sensitive health data, as well as the potential for insurance companies to use the data to discriminate against people with certain health conditions.
