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DNA Testing Firm Goes Bankrupt; Who Gets the Data?

Posted on November 18, 2009 by Dissent

Kim Zetter reports:

An Icelandic firm that offers private DNA testing to customers has filed for bankruptcy in the U.S., raising privacy concerns about the fate of customer DNA samples and records, according to the Times of London.

DeCODE Genetics, a genetics research firm, began offering personalized DNA testing through its deCODEme website two years ago. A customer mails in a sample taken from the inside of his cheek, and the service calculates the subject’s genetic risk for disease — cancer, diabetes, Alzheimer’s, heart disease.

[…]

The company told the Times that Saga would be bound by deCODE’s privacy agreements with customers, which prohibits the disclosure of customer data to third parties such as insurers, employers or doctors.
But privacy advocates are concerned that Saga, whose primary interest is bottom-line profits, will opt to sell subscriber data — possibly in an anonymized form to researchers and pharmaceutical companies. Academic researchers have shown that anonymized data can be correlated with other data to identify people.

Read more on Threat Level.

Related posts:

  • Baseball's Use of DNA Raises Questions
  • Hearing today in 9th Circuit tackles DNA privacy (updated)
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