UK ( Parliament Politics Maganize ) Health data voluntarily contributed for medical research by 500,000 UK citizens has been disclosed to insurance companies, contrary to assurances that it would remain confidential. An inquiry by The Observer revealed that the UK Biobank permitted access to its extensive biomedical dataset for multiple occasions between 2020 and 2023.
This information was shared with insurance consultancy and technology companies for the development of digital tools aimed at aiding insurers in forecasting an individual’s susceptibility to chronic diseases. The revelations have sparked apprehension among geneticists, advocates for data privacy, and campaigners, highlighting concerns about the scrutiny and ethical safeguards in place at the Biobank.
Health Data Comprising All the Information
Established in 2006 with the aim of aiding researchers in the study of diseases, the database comprises millions of blood, saliva, and urine samples, consistently collected from approximately 500,000 adult volunteers. This extensive repository also includes medical records, scans, data from wearable devices, and details about participants’ lifestyles.
Researchers worldwide, upon approval, can acquire access to a spectrum of records by paying fees ranging from £3,000 to £9,000. These records encompass medical histories, lifestyle information, and even complete genome sequencing data. The research conducted using this resource has resulted in significant medical breakthroughs, earning the Biobank a reputation as a prized asset in British scientific endeavors.
While Biobank asserts stringent protection of its data, allowing access solely to legitimate researchers engaged in public-interest health projects, it claims inclusivity across various affiliations, including academic, charitable, and commercial organizations, such as insurance companies. The organization contends that participants were informed about data sharing during recruitment and initial assessments.
However, evidence compiled by The Observer implies that Biobank did not expressly inform participants about data sharing with insurance companies. Furthermore, public commitments were reportedly made by Biobank, vowing not to share data with such entities.
Adult’s Data Provided to Insurance Companies
In its initial announcement in 2002, Biobank explicitly assured that data would not be provided to insurance companies. This commitment arose in response to concerns about the potential discriminatory use of the data, including the exclusion of individuals with specific genetic profiles from insurance coverage. Despite this promise, the recent revelations suggest that data sharing with insurance companies has taken place, raising questions about the fulfillment of the organization’s earlier commitment.
The commitment to refrain from sharing data with insurance companies was not only articulated during the project’s announcement in 2002 but was also reiterated in multiple public statements by Biobank backers. These statements assured the incorporation of safeguards to prevent access by insurance companies, police forces, or employers.
However, Biobank recently stated that this longstanding pledge, reiterated over a four-year period, no longer holds. The organization explained that this commitment was made before the formal commencement of recruitment in 2007, and volunteers were provided with revised information when they enrolled in Biobank. This revelation raises questions about the evolution of policies and the communication of these changes to participants over time.
The information provided to Biobank participants through leaflets and consent forms included a provision stating that anonymized Biobank data could be shared with private firms for “health-related” research. However, these documents did not explicitly specify the inclusion of insurance firms or address the previous assurances.
Nature of Data Remains Unclear
Biobank clarified that commitments stating “insurance companies will not be given any individual’s information, samples, or test results,” reiterated in leaflets over a 17-year span, were intended to apply to identifiable information linked to a person’s name.
This clarification suggests that the commitment pertained specifically to personal identification data rather than other forms of data related to Biobank participants. The distinction underscores the complexity of the information-sharing landscape and the nuances in the commitments made by Biobank over the years.
The specific details regarding the nature of the data shared with the insurance industry remain unclear because Biobank does not routinely disclose this information and has declined to do so thus far. However, project summaries available online indicate that the shared data likely included de-identified, participant-level information on diseases, lifestyle, and biomarkers.
One of the companies granted access, ReMark International, identified as a “global insurance consultancy” underwriting a million policies annually, includes clients like Legal & General and MetLife. In its application to Biobank, approved in December 2022, the company stated its need for data to develop an algorithm predicting diseases and mortality.