Techdirt. Stories filed under "genome"

DailyDirt: Looking At The Human Genome

Michael Ho — Tue, 6 Nov 2012 17:00:00 PST

The human genome contains an incredible amount of information that we are only starting to parse. Sequencing large amounts of DNA is getting cheaper and faster, so it's only a matter of time before we'll be able to collect a vast amount of genetic information and connect it with practical medical diagnoses and treatments. Here are just a few projects working on decoding our genetic blueprints.

The international ENCODE project has been looking at the human genome to try to figure out what all the nucleotides do. Less than 2% of the genome is used for making proteins, and we're just beginning to discover that about 80% of the genome is biologically active and isn't just "junk" DNA. [url]
The Genographic Project is asking the general public to participate in a genome analysis experiment to gather a broad sampling of DNA data. The results will be anonymous (but they'll have your DNA...?) and dedicated to the public domain. [url]
The 1000 Genomes Project currently claims to have the world's largest, most detailed catalog of human genetic variation. The database includes sequenced genomes from over 1,092 people and should help medical researchers develop tests for genetic diseases. [url]

If you'd like to read more awesome and interesting stuff, check out this unrelated (but not entirely random!) Techdirt post.

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Your Genome, Your Data

Glyn Moody — Thu, 21 Jun 2012 05:07:00 PDT

The computing revolution is not the only one driven by constant scaling of technologies: the field of genomics -- the study of DNA sequences -- has also enjoyed rapid falls in basic costs over the last decade and a half. This means that whereas the first human genome cost around $3 billion to sequence, we are fast approaching the point where it will cost first a few thousand, and then a few hundred dollars to sequence anyone's complete DNA. An interesting post on the Health Affairs Blog points out that neither the law nor society is ready for this.

Companies like 23andMe are already offering people the ability to find out about a range of important genes very simply, and for relatively low cost:

The concern is that someone might learn of that same risk [for breast cancer] for $499 by spitting in a tube and hitting the "breast cancer result" button at 23andMe, a company that will test saliva samples for diseases as well as for DNA ancestry. No one should take an action, such as prophylactic surgery without confirming results from 23andMe, which reports on only the three most common mutations.

Against that background of possibly life-changing or even life-threatening decisions being made on the basis of results obtained from a blob of saliva, the Food and Drug Administration (FDA) is now looking to regulate this market. But in the opinion of the article's authors, there's a danger here: If regulators impose rules that allow us to obtain genomic data only as a medical service and through a health professional, however, access will never be cheap because it will always be bundled with expensive professional medical services. This is what Germany has done, and we should not follow their lead. By equating genome services to medical services, the German Government has reduced access, significantly limited the possible benefits to their citizens, and dramatically increased the costs.
The authors make a suggestive comparison: It’s as if [governments] had decided to cut off access to the World Wide Web in response to fears of pornography and copyright infringement. Imagine what the world would be like today if we had passed the Draconian Internet regulation bills proposed a decade ago when the Internet was as young as the nascent genomics sector is now. We would have sucked the water out of the pond that gave birth to the marvels of Google, Wikipedia and Facebook.
There's another parallel, too. Just as with the Internet and its digital deluge, the imminent world of abundant, ultra-cheap genomic data could also could power the growth of a huge new economic sector: Our curiosity -- and sometimes our health -- will require 'experts' to do the science and to explain its implications. Some of these "genomicists" will be health professionals no doubt: genetic counselors, nurses, social workers, or physicians who learn the intricate math and follow the exploding technical literature. Others will be experts in genealogy, history, ethnicity, engineering and anthropology. New businesses are emerging to create interpretive software and interactive websites that walk us through tours of our genomic data. If you’re young and computer savvy; if you study genetics and read anthropology and history, you may have a job in a field that is just coming to life. That is, if we don’t screw it up by strangling this nascent field in its cradle.
The trick will be to allow these new businesses to aggregate and analyze DNA information while preserving individual privacy and control over genomic data that is unequivocally yours. That's going to be hard, but the potential benefits in terms of improving people's health make it worth striving for. For more information, check out the original post which goes into greater detail.

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Cocoa Genome Released... But Is It Really In The Public Domain?

Mike Masnick — Thu, 23 Sep 2010 05:42:04 PDT

Last week, a PR person working for Mars (makers of M&Ms and such) sent me an email about how scientists from Mars along with the USDA and IBM (among others) had sequenced the cacao genome and that "the results of the research will be made available to the public with permanent access," at the accurately named Cacao Genome Database. Sounded interesting, but it was a busy week, and I wasn't able to spend much time digging into it. I was intrigued, however, by the claim in the press release that the team had "released the preliminary findings of their breakthrough cacao genome sequence and made it available in the public domain". It's so rare to hear of some big companies doing research and release it into the public domain, that it, alone, seemed newsworthy, and something I wanted to explore.

Thankfully, before I even got the chance to, I saw Glyn Moody point me to Glen Newton's analysis of the claims of public domain and open access for the data, only to discover it's not true. While they are making the data available, it's hardly public domain. You have to agree to a license that has some serious restrictions in it (and some contradictions). For example, it lists out the ways you can use it -- and leaves out commercial use. Real public domain doesn't care (and doesn't require a license).

Then there's this:

The User shall not transfer the information referred to in this agreement, or any copy of them, to a third party without obtaining written authorization from the Providers which will only be provided subject to the third party user entering into this same IAA.

I'm kind of wondering if this is just boilerplate that the lawyers threw into this not understanding what public domain means. But it seems pretty silly to (a) create a license for supposedly public domain data which (b) doesn't allow you to tell anyone about what's in the license!

There is a nice bit in the "license" where it says you can't use the data in a patent application, but one would hope that the data being in the public domain would exclude it from being used in a limited fashion elsewhere anyway (sans license agreement). Separately, someone in the comments notes that the original license agreement said that if you used the data, you couldn't publish any articles about your findings until some period in the future -- but that clause was later removed (though, it's unclear if those who signed in prior to the removal still need to live by that).

However, I do have a pretty serious question: is this data in the public domain? Last year, we pointed out how difficult it is to put something into the public domain. Here, we have a case where Mars, the main company behind the research, has put out a press release, which clearly states:

Today, Mars, Incorporated, the U.S. Department of Agriculture-Agricultural Research Service (USDA-ARS), and IBM released the preliminary findings of their breakthrough cacao genome sequence and made it available in the public domain.

Thus, one could easily read that and believe these findings are public domain. But, then, when you go to the actual site, it claims all sorts of license restrictions. So, if someone goes and copies all the data and puts it on their own site, is that legal? It certainly looks like the company put the info into the public domain via the press release, and once something is in the public domain, you can't reverse that (well, unless you're the 10th Circuit appeals court). So, it certainly looks like someone could make the argument that the license Mars is trying to put on this data is meaningless. The company has already declared it in the public domain, and thus, no license applies. But, here's where the lack of any clear rules for how you officially make something public domain come into play. Would Mars claim that the press release "misrepresented" the company's position?

I don't mean to come down too hard on Mars. It's actually quite nice that a company would do such research and try to make it "open" and try to prevent it from being locked up in patents. I really do commend such actions, and don't wish to negate that point. But, I think the public domain is a really important thing, and if a company wants to put content into the public domain, they should be clear about what's really in the public domain.

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