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    Times (UK): Privacy fears as DNA testing firm deCODE Genetics goes bust

    The Times reports on possible privacy problems concerning to the closing of an Icelandic DNA-testing company. The case raises similar questions to those in the United States case of airport program Clear. Clear was the leading company in the Transportation Security Administration’s Registered Traveler program, which offered dedicated security lines for travelers who paid an annual fee, passed a background check and submitted biometric data such as iris scans and fingerprints.

    When the company folded in June, there were questions about what would happen to the biometric data of Clear’s 250,000 customers: Would the personal biometric data of individuals be sold to another company — one with which the customers have no relationship and a possibly different privacy policy? In August, a judge ordered Clear not to sell the data and there are reports Clear may reopen.

    The Times reports:

    A leading genetics company that has pioneered personal DNA testing in health assessments went bust yesterday, raising privacy concerns about the sensitive data it holds.

    DNA profiles belonging to thousands of people who have paid up to £600 for internet genetic tests are to be transferred to a new organisation, after deCODE Genetics filed for chapter 11 bankruptcy in a US court. […]

    The genetic records of its customers will now be held by Saga Investments, a venture capital group that has agreed to buy deCODE’s core science operations, including its deCODEme personalised genetic testing service.

    Kari Stefansson, deCODE’s chief executive, told The Times that ownership of genetic data remained with the company’s customers and that Saga would be bound by a privacy policy that prevents disclosure of data to third parties such as insurers, employers or doctors.

    Industry experts said that Saga would want to maximise returns on its investment, and could still make wider use of data that some subscribers may find uncomfortable. Pooled and anonymised information, for example, could be sold to academic researchers or pharmaceutical companies. […]

    Helen Wallace, of GeneWatch UK, a group that campaigns about the risks of genetic technologies, said the case showed that people who bought commercial DNA tests could not be confident that their data would not be put to other uses.

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