Deals For Genetic Data Raise Issues of Privacy, Sharing

Posted: January 15, 2015 at 1:40 am

In three recent deals, drugmakers are betting that personal genetic maps will finally fulfill their early promise to unlock secrets and cure diseases.

At the same time, the agreements revived questions about privacy protections and how useful personal genetic data will prove to be.

Roche Holding AG (RHHBY) committed $1 billion to take control of Foundation Medicine Inc. (FMI), which sequences genes of cancer patients, aiming to customize treatment. Roches Genentech unit said it would pay as much as $60 million for access to 23andMe Inc.s data on customers with Parkinsons disease. And Pfizer Inc. (PFE) reached a deal that will allow the drugmaker to analyze personal genetic information from 650,000 23andMe customers, without giving terms.

The pacts, together with 23andMes announcement that it will enter into partnerships with eight other companies this year, boosted confidence in the commercial value of gene mapping. Since the first draft of a full human genome was deciphered in 2001, researchers have predicted breakthroughs in understanding the origins of disease, only to be frustrated as business developed slowly and regulatory issues cropped up.

Foundation Medicine and 23andMe were created to serve consumers directly and are not developing medicines. Foundation Medicines clients pay to have more than 300 genes in their tumors sequenced, and then receive counseling about voluntarily entering trials of drugs that may address genetic abnormalities in their cancers. Customers of 23andMe, on the other hand, are encouraged to learn about yourself through genetics.

Now drugmakers are seeing research value in the genetic databases the companies have created.

Core to our mission is making data available to other researchers to advance genetic discoveries, and we are committed to doing so in the most responsible way possible, said Angela Calman-Wonson, a spokeswoman for Mountain View, California-based 23andMe.

Genentech will ask 23andMe customers with Parkinsons disease to consent to participate in having their full genomes - - all 6 billion chemical units of their DNA -- sequenced and analyzed. The company will look in those anonymous results for clues to how Parkinsons arises and how to treat it, said Alex Schuth, director of development for technology innovation and diagnostics.

After Genentech has completed its drug discovery work, the genome data will be put into a public database where other researchers and companies can freely study it, Schuth said.

We have no intention to further sell this data to anyone else, he said in telephone interview.

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Deals For Genetic Data Raise Issues of Privacy, Sharing

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