Genetic Testing Company Wants To End 'Data Hoarding', Spends $20 Million To Put 10,000 Genomes In The Public Domain

from the learning-and-understanding-faster dept

Recently, we wrote about how Sage Bionetworks was sharing data it collected during a clinical study. That was a laudable move, but made much easier by the non-profit nature of the research organization involved. Here's a sign that openness is spreading even to commercial research, as reported by The New York Times: In an unusual move, a leading genetic testing company is putting genetic information from the people it has tested into the public domain, a move the company says could make a large trove of data available to researchers looking for genes linked to various diseases.



The company, Ambry Genetics, is expected to announce on Tuesday that it will put information from 10,000 of its customers into a publicly available database called AmbryShare. The AmbryShare site offers the following explanation for this generosity: AmbryShare is our commitment to end data hoarding by breaking the mold and restoring the balance. We are sharing one of the largest genome (exome) disease databases, containing aggregated anonymous data from 10,000+ human genome(s). This data is estimated to triple our collective knowledge of genetics and many human diseases.



With your help, we can provide enough public data that there will be no reason for others not to share. If everyone shares, we can learn and understand faster. With this, treatments and cures will come. As the New York Times article points out, 10,000 exomes -- essentially, the 1% of the genome that contains the instructions for building the body's proteins -- is not a huge number, but Ambry Genetics hopes to add data from as many as 200,000 customers a year to the database. So far it has spent $20 million on the project. In part, it has been able to bear that cost because of the key Supreme Court decision which struck down Myriad Genetics' patents on genetic testing. That cleared the way for other companies to make money by offering the tests -- including Ambry Genetics.

Two other factors helped the company choose sharing over "data hoarding". First, Ambry Genetics is privately held and majority owned by Charles Dunlop, its founder and chief executive, and his family. Secondly, Dunlop has a very personal reason for wanting to make researchers' access to the genomic data as easy as possible: "I’ve got Stage 4 cancer myself," he said, referring to advanced prostate cancer that is in remission. "I don’t want to wait an extra day." As more and more people are coming to understand, the best way to accelerate research and find new treatments and cures, is to open things up, to the fullest extent possible.

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Filed Under: data hoarding, genetic testing, genomes, open access, public domain

Companies: ambry genetics, sage bionetworks