Insurance companies given access to UK Biobank health data, despite promises
Colour me totally unsurprised. Disappointed, though:
When the project was announced, in 2002, Biobank promised that data would not be given to insurance companies after concerns were raised that it could be used in a discriminatory way, such as by the exclusion of people with a particular genetic makeup from insurance. In an FAQ section on the Biobank website, participants were told: “Insurance companies will not be allowed access to any individual results nor will they be allowed access to anonymised data.” The statement remained online until February 2006, during which time the Biobank project was subject to public scrutiny and discussed in parliament. The promise was also reiterated in several public statements by backers of Biobank, who said safeguards would be built in to ensure that “no insurance company or police force or employer will have access”. This weekend, Biobank said the pledge – made repeatedly over four years – no longer applied. It said the commitment had been made before recruitment formally began in 2007 and that when Biobank volunteers enrolled they were given revised information.
(tags: biobank uk politics health medicine data-privacy insurance discrimination science)