UK Biobank responds to claim it shared data with insurance companies

An investigation published in the Observer newspaper claims that UK Biobank granted insurance companies access to its database, despite previous assurances that it would not.

Established in 2006, UK Biobank holds deidentified medical and genomic information of around 500,000 participants, to be used for research purposes. The investigation claims that participants were not made aware that data would be shared with insurance firms directly.

In a response to the investigation, principal investigation and chief executive of UK Biobank, Professor Sir Rory Collins, said: 'The trust of participants in UK Biobank is of paramount importance. As such we have been meticulously transparent with participants about how their data is used, and it is factually wrong and damaging to suggest otherwise.'

The Observer article states that at the launch of the project, but prior to recruitment of participants, UK Biobank publicly promised that data would not be given to insurance companies. These assurances were given after 'concerns were raised that [data] could be used in a discriminatory way, such as by the exclusion of people with a particular genetic makeup from insurance,' the article says.

UK Biobank told the Observer that since 2007, when recruitment started, volunteers were given 'revised information' in leaflets and consent forms that made no such reference to insurance companies.

Professor Collins added: 'All participants in UK Biobank gave consent for their deidentified data to be used by approved researchers from all types of academic and commercial organisations for health-related research that is in the public interest.'

The decision regarding whether or not to grant researchers from insurance companies access to UK Biobank data was made by 'an expert data access committee with independent research ethics input,' he explained.

Professor Yves Moreau, a genetics and AI expert who is not involved in UK Biobank, told the Observer that the alleged data sharing appeared to be a 'serious and disturbing breach of trust'. The Information Commissioner told the Observer that it is considering the matter.

Last month, UK Biobank wrote to all GP practices in England requesting the release of primary care data for consented participants from the participants' GPs, as the data is not held centrally by the NHS, but rather is held by GP practices. This letter was endorsed by NHS England and by the Royal College of General Practitioners, but not by the doctors' trade union, the British Medical Association (see BioNews 1210).