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

Wed, Mar 23rd 2016 3:22am — Glyn Moody

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

11 Comments

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Anonymous Coward, 23 Mar 2016 @ 3:42am

Pretty much every other genetic testing company will go something like this: "LOL that's dumb, well thanks for all the data!"
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lucidrenegade (profile), 23 Mar 2016 @ 4:34am

Is this essentially making the DNA of 10000 people available to law enforcement, etc?
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Anonymous Coward, 23 Mar 2016 @ 5:14am

As long as those people have given their accord (opt-in, not opt-out), then I have no issue with this.
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Ninja (profile), 23 Mar 2016 @ 7:03am

"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."

I may sound cruel or something here but maybe if the executives behind other closed experiments got some cancer for themselves suddenly money would look a lot less valuable and actually sharing knowledge to make the search for a cure much faster and effective would make much more sense.

Nothing like being on the verge of death and seeing greedy bastards hampering research for the cure you need to soften the grip onto information...

These pharma companies that charge exorbitant prices for their medicine for no reason other than make easy money would learn a thing or two with some serious diseases.
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Ninja (profile), 23 Mar 2016 @ 7:04am

Re:
Until, of course, they get cancer themselves, no?
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Anonymous Coward, 23 Mar 2016 @ 7:06am

Re:
That is a smart move, as a genetic testing company makes money from interpreting genetic information, and the more that is known about genes the better the service they can offer. It not like they are giving away how they carry out genetic testing, which is the information their competitors would be interested in.
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Anonymous Coward, 23 Mar 2016 @ 7:27am

One of the problems with patents is that it discourages researchers and businesses to publish what doesn't work (and to make recommendations for future research) so that other researchers can try something different. Instead if a researcher has something they can patent they will patent it. If not they won't publish what doesn't work in fear that someone else will use that information to find what does work and patent it. This forces other researchers to often duplicate the same failures again before possibly getting a successful result (or failing to do so because of the cost of all the failed results).

Research is supposed to build upon itself. One person or group does research, the results didn't come out as expected, but they publish their results and procedures anyways and make recommendations. This guides future researchers in the right direction. Patents hinder that process because it doesn't acknowledge and reward all of the failures that go into an eventual success and so failures don't get published.
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Anonymous Coward, 23 Mar 2016 @ 7:38am

Re:
and this is partly why research is so expensive, because patents and copy protection laws encourage a lot of duplicate efforts and research. When journals are locked up behind a paywall for 95+ years and aren't allowed to be cataloged and searched through and many of them become inaccessible or difficult to find in time because they get lost to history due to copy protection laws eventually when someone wants to do R&D on something they want to first search the literature. Someone else may have already done the same research but because the publication is orphaned and the print is discontinued and so the publication is essentially lost or too difficult to find the researcher may have to reduplicate the same efforts because of their inability to find what has already been done. Then IP extremists claim that IP laws are needed because research is so expensive. IP is a huge part of the reason why R&D is so expensive because it encourages a lot of duplicate efforts.
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Anonymous Coward, 23 Mar 2016 @ 7:50am

Re:
Yes because being charitable and trying to contribute something useful to society is 'dumb'. Typical selfish IP extremist mindset.

IP laws are intended to be self serving and reflect the selfish nature of those that lobby for them. They do little to serve the public interest and they aren't intended to because they are lobbied for by a bunch of sociopaths just like the ones here on Techdirt that think that doing something to help others is 'dumb'.
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Anonymous Anonymous Coward, 23 Mar 2016 @ 8:46am

Can one actually hide in a crowd?
Aren't there a bunch of privacy considerations here?

Did they get the DNA contributors permission?

Does this move violate HIPPA?

As mentioned above is this now accessible by law enforcement?

Is the data anonymous?

Can the data be anonymous?

Are they going to be sued by Ancestry.com because there is now competing information out there?

etc.
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Anonymous Coward, 23 Mar 2016 @ 12:47pm

Re: Can one actually hide in a crowd?
'Aren't there a bunch of privacy considerations here?'

Yes, I'm sure they'll respond to a query from you with the exact details.

'Did they get the DNA contributors permission?'

Same as above. Why are you asking here? There are many DNA testing companies who already share data and this is not a new consideration. Contact them.

'Does this move violate HIPPA?'

Not if informed consent is given.

'Is the data anonymous?'

From the VERY article: "containing aggregated anonymous data from 10,000+ human genome(s)."

'Are they going to be sued by Ancestry.com because there is now competing information out there?'

This is an exome database. Ancestry.com does not do the same test nor produce similar results. Short answer: No, nor by FTDNA, 23andme and so on who do autosomal test or SNP testing.
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