Privacy Guidelines For Genetic-Testing Sites Touted As ‘Step Forward,’ But They Don’t Address De-Identified DNA

Samples that are stripped of any identifying details are extremely lucrative to pharmaceutical companies and other medical organizations, but the consumers have no way of knowing when their data is used. In other public health news: birth defects, Ebola, scooter injuries, brain surgery, and more.

Bloomberg: ‘Glaring Gap’ Seen In DNA Privacy Pledges By 23andMe, Ancestry Genetic-testing companies that have decoded the DNA of millions just introduced new guidelines to protect data privacy. But those best practices failed to address a major concern: what happens to customers’ data that is shared for research with pharmaceutical giants, academics and others, often for a profit. Just how lucrative the business of genetic testing is came into light last week when British drugmaker GlaxoSmithKline Plc agreed to buy a $300 million stake in 23andMe Inc., gaining access to anonymized data with the hope of identifying new targets for drugs. (Brown, 8/2)

Reuters: Cashing In On DNA: Race On To Unlock Value In Genetic Data How much is your DNA worth? As millions of people pay for home tests to check on ancestry or health risks, genetic data is becoming an increasingly valuable resource for drugmakers, triggering a race to create a DNA marketplace. GlaxoSmithKline’s decision to invest $300 million in 23andMe and forge an exclusive drug development deal with the Silicon Valley consumer genetics company crystallizes the value locked up in genetic code. (Hirschler, 8/3)

READ the entire article here