Genetic Privacy

“Stealing genetic and medical information without consent is unethical and dangerous, allowing every individual to be tracked and their relatives to be identified.”

The Daily Scan – “Private companies may be able to purchase access to medical and genetic data, and possibly to personal data, housed in databases of the UK’s National Health Service, the Observer‘s Jamie Doward reports.

But, this “revelation, which contradicts government claims that such material would be completely anonymous, has raised fears that pharmaceutical firms and insurance companies will be able to determine the identities of people susceptible to particular diseases,” Doward says.

Doward notes that details obtained under the Freedom of Information Act indicate that the data provided will initially be anonymized, but that companies can appeal to receive data that includes ages and postcodes. Further, while people will be able to request that their genetic data not be shared, it might not always be possible.” Full Story

Animation of the structure of a section of DNA...

The Guardian – “The government is keen for Britain to be at the forefront of the genetic revolution, a potential multi-billion-pound industry. Last year David Cameron launched a £100m scheme to map the genomes of up to 100,000 people, saying it would help to save lives by delivering new treatments. The move was seen as the first step in the construction of a national human genome database.

Under the scheme, firms would be able to access the information at a cost, but ministers insist that all data will be strictly anonymous. However, material released under the Freedom of Information Act reveals that firms can invoke an appeal process to demand “patient-identifiable data”, such as age and postcode.

“Without a semblance of transparency, a national genetic database, connected to personal medical records and made available to the private sector, has been set up. Privacy laws have been redefined and our own genomic information is being commercialised,” said Edward Hockings, a bioethicist from the pressure group Ethics and Genetics, who made the FOI requests.” Full Story

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