Who Should Get The Benefits When You Donate Your DNA For Research?

from the tales-from-the-Blue-Zone dept

A few weeks back, we wrote about researchers calling for up to five years' exclusivity for clinical trial data derived from volunteers. That kind of information, typically derived from trials of a new drug, tends to be highly specific. But there's another kind which can potentially contain millions of valuable data points. In fact, the genetic information contained within every strand of DNA can not only provide important insights into countless diseases and medical conditions, but is the closest thing that exists to a digital summary of the person it comes from.

Because of that unique ability to store key data about people, collections of DNA have become a hugely important scientific resource. And because DNA is so intimately bound up with a single, identifiable individual, they naturally feel a very strong connection to that digital string and how it is used. Both of those traits are evident in this fascinating story from the Guardian about Sardinia's "Blue Zone" with its unexpectedly long-lived inhabitants:

The story starts nearly 20 years ago when Gianni Pes, a Sardinian scientist at Sassari University, visited nearly all of Sardinia’s 377 municipalities to try to prove that certain areas had an unusually large number of people who lived extremely long lives. When they found a town that met their criteria, they marked it on their map with a blue marker. When they were done, the Sardinian Blue Zone was established.

Naturally, scientists are keen to understand whether there is some genetic characteristic shared by these exceptional individuals:

In all, four databases of DNA samples have been collected over the years, with some researchers refusing to collaborate with others.

That hints at the deepening bitterness that has engulfed this area of research, as two groups claim the right to investigate one of the region's DNA databases:

One of them was Shardna, created by a scientist called Mario Pirastu. Another entity, a partly publicly funded group called Parco Genetico, was established at the same time to facilitate the data collection and act as an intermediary between Shardna and the Blue Zone towns. Now the two groups both claim rights to the database.

It's a complicated tale, with many murky corners, and it's worth reading the whole Guardian feature to follow its twists and turns as various companies go bankrupt, and the precious database containing blood samples from 13,000 Blue Zone inhabitants keeps changing hands. But as the Guardian rightly points out, the real issue is not which outfit should get to own the database, but the following:

The conflict has raised the kind of thorny ethical questions that are likely to become more pervasive as scientists tap into the promise of massive DNA databases to learn more about disease. Should a private company be able to profit from the study of a population’s DNA, when the DNA was voluntarily donated?

Needless to say, lawyers are now involved in resolving the more mundane issues of ownership of the Blue Zone blood samples. But even if a court hands down its judgment for this particular case, the larger ethical issues will remain, and become ever-more pressing as the importance and value of DNA databases continues to rise.

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Filed Under: dna, privatization, public good, research

Yes, Getting The US Government Out Of 'Managing' Internet Domain Governance Is A Good Thing

from the moving-on dept

A little over two years ago, when the Commerce Department officially announced plans to "relinquish control" over ICANN's IANA (Internet Assigned Numbers Authority) we tried to explain why people should stop freaking out. There were a bunch of people up in arms, claiming that the US government was "giving away the internet." That was, and still is, complete hogwash. There are two important things to understand in this. First, the Commerce Department's "oversight" over ICANN and IANA is already basically non-existent. It was always more on paper than in reality, as the Commerce Department, rightly, took a totally hands off approach. Second, there has been a big effort by foreign governments, mainly Russia and China, to take control over the internet, and strip it from ICANN, and putting it in the ITU, a confusing mess of an organization that's a part of the UN, but heavily controlled by governments without input from actual technologists or public interest groups.

A key part of the Commerce Department's "transition" plan was that it would basically erase the almost entirely imaginary link between IANA and the Commerce Department, but only if a plan was created that kept IANA independent and not as a part of the UN or any organization that would lead to mostly government control, as opposed to what everyone (unfortunately) likes to call a "multistakeholder process" (which just means not just government in the room). And with that plan in place, the Commerce Department's National Telecommunications & Information Administration (NTIA) has now come out in support of this plan.

The U.S. Commerce Department’s National Telecommunications and Information Administration (NTIA) announced today that the proposal developed by the global Internet multistakeholder community meets the criteria NTIA outlined in March 2014 when it stated its intent to transition the U.S. Government’s stewardship role for the Internet domain name system (DNS) technical functions, known as the Internet Assigned Numbers Authority (IANA) functions.

The announcement marks an important milestone in the U.S. Government’s effort to complete the transition of the Internet’s domain name system and ensure that the Internet remains a platform for innovation, economic growth, and free speech.

For the last 18 years, the United States has worked with businesses, technical experts, governments, and civil society groups to establish a multistakeholder, private-sector led system for the global coordination of the DNS. To accomplish this goal, in 1998, NTIA partnered with the Internet Corporation for Assigned Names and Numbers (ICANN), a California-based nonprofit, to transition technical DNS coordination and management functions to the private sector. In 2014, NTIA initiated the final step in the privatization process by asking ICANN to convene global stakeholders to develop a plan to complete the transition away from NTIA’s remaining legacy role.

Now, you would think that "small government" types would be happy about the US government completing its "privatization" of internet governance. But, that's because many "small government" types are only small government types when it suits them. Senate Ted Cruz and Rep. Sean Duffy have rushed out a bill, called the "Protecting Internet Freedom Act" that would block the Commerce Department from completing the privatization of the internet. This is both silly and counterproductive.

The Commerce Department's flimsy and never really used "control" over NTIA is basically meaningless yet it's frequently used by foreign governments and the ITU/UN as a reason for taking complete control over the IANA process. And that's only ramped up in recent years due to concerns about the NSA and surveillance. In other words, the US having any official control over internet governance is actually helping authoritarian governments by making the argument that US "control" over the internet is only helping the NSA. By separating IANA from the US government, but keeping the overall process as one that is not controlled by any government, you actually have a better chance of keeping the internet functioning in an open manner. Leaving it under the US government control, no matter how flimsy that link really is, only gives foreign governments useful fodder for a more complete move to take over control themselves.

Eli Dourado, who has spent a ton of time digging into and being involved in internet governance issues, has a great and detailed post about why this transition is a good thing and should be supported. It has all of the relevant history here (including my favorite point about how prior to ICANN, the IANA functions were controlled one dude, Jon Postel, who more or less declared himself the czar over how the domain name system was managed). But he also gets directly to the point: Congress forcing the US government to keep this "control" over IANA would do much more harm than good:

In truth, authoritarian regimes would love nothing more than to see the IANA transition fail. It would give them another shot at taking the issue to the ITU, this time with the added ammunition of pointing out that the United States does not keep its word regarding Internet governance. Oddly, this places Cruz and Duffy on the same side as Russia and China, against the world’s democracies, the Obama administration, sober Republicans, virtually every US tech company, the Internet Society, and virtually every freedom-loving intellectual or activist I have met who has participated on a US delegation to the ITU.

Separately, he also points out that for all the hype over this, the IANA function is actually not nearly as important as some make it out to be. The US government losing whatever sense of "control" it had over it is unlikely to have a huge impact on the internet itself. So the "costs" to this transition are basically nil. The cost to keeping the paper control in place, however, may be very large, in that it provides tremendous ammunition to foreign authoritarian regimes to push for much more extreme changes to internet governance that would be much, much worse.

Filed Under: commerce department, iana, icann, internet governance, itu, ntia, privatization, sean duffy, ted cruz, transition, un, wcit
Companies: icann

Dirty Deeds: French National Library Privatizes Public Domain, Part 2

from the because-the-situation-hadn't-hit-MAXIMUM-UNCOMFORTIBILITY dept

Earlier in January, the French Ministry of Culture proudly announced a fresh public-private partnership between the French National Library and the privately-held ProQuest, defining how the company will digitize 70,000 books originally published between 1470 and 1700. The agreement sparked outrage among free culture defenders, who denounced a privatization of materials in the public domain:

"While these public private partnerships enable the digitization of these works they also contain 10-year exclusive agreements allowing the private companies carrying out the digitization to commercialize the digitized documents. During this period only a limited number of these works may be offered online by the BnF."

As none of the agreement partners bothered to reply to inquiries from journalists and free culture advocates, the only source of information was a press release from the Ministry of Culture mentioning an official agreement between the Library (Bibliothèque nationale de France, BnF) and ProQuest. The release was highlighting the somewhat obscure branch "BnF-Partenariats" as executives of the contract, and that this agreement is part of a wider initiative: "Early European Books."

The issue here is not commercial use of materials in the public domain but the labyrinthine logic of the agreement. This logic proposes that a client from the public sector (i.e. research and education institutions) will buy a number of works handled by another public institution (i.e. the French National Library), and the profits will reimburse money advanced by a private service provider. A painful situation for our cultural heritage, forcibly entrusted to be the square peg to get into the round monetary hole.

What is unclear, however, are the legal terms under which the digital copies will be handled. In plain English, the BnF has signed an agreement to sell access to digitized copies of books in the public domain. This makes a travesty of its official role: the BnF is supposed to grant access to these works, but the BnF-ProQuest agreement actually blocks access. In the present (whacko) case, the Library – that is, the public institution invested with the power to manage commons, – not only does what is normally the publisher's job, selling, but it also monetizes these works, thus acting as a merchant, which takes work from publishers. The larger questions this raises over exclusivity and ownership of these digital versions are very important. From what's been said to date, it seemingly implies that the digitization of those books means the outcome is a brand new production owned by the ProQuest, the digitization service provider.

Even more strange? ProQuest's agreements elsewhere are quite different, and not nearly as controversial. The BnF-ProQuest agreement is a part of the "Early European Books" initiative. In addition to the French, four other national libraries are a part of the effort: the Royal Library (Denmark), the National Central Library of Florence (Italy), the National Library of the Netherlands, and the The Wellcome Library, London (UK).

The details for each of these agreements, however, are quite different than the agreement in France. Indeed, in every other case, ProQuest digitizes, at its own expense, the works in the public domain operated by the respective partnering national library. It then offers free access to the digital versions of these materials within the country. As ProQuest needs to earn money, it sells the access to its database to other countries (through subscriptions contracted by the universities). According to the BnF-ProQuest agreement, however, no free access to the digital versions is provided other than the very limited version as described above.

Oh, and as if a national library agreeing to sell the country's cultural heritage was not absurd enough, when asked for the details of the agreement the BnF has now admitted that its contract with ProQuest has been misplaced. One might properly note that, so too, has the public domain been "misplaced" with this deal.

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Filed Under: france, libraries, privatization, public domain
Companies: bnf, proquest

French National Library Privatizes Public Domain Materials

from the deep-betrayal dept

Copyright is sometimes described as a bargain between two parties: creators and their public. In return for receiving a government-backed monopoly on making copies, creators promise to place their works in the public domain at the end of the copyright term. The problem with that narrative is that time and again, the public is cheated out of what it is due.

For example, copyright terms can be extended retrospectively, which means that material will be locked up for longer than originally promised in the "deal". Or there can be a privatization of public domain materials, using contracts, as reported here by Communia:

Last week the Bibliothèque nationale de France (BnF) concluded two new agreements with private companies to digitize over 70.000 old books, 200.000 sound recordings and other documents belonging (either partially or as a whole) to the public domain. While these public private partnerships enable the digitization of these works they also contain 10-year exclusive agreements allowing the private companies carrying out the digitization to commercialize the digitized documents. During this period only a limited number of these works may be offered online by the BnF.

Communia points out:

The value of the public domain lies in the free dissemination of knowledge and the ability for everyone to access and create new works based on previous works. Yet, instead of taking advantage of the opportunities offered by digitization, the exclusivity of these agreements will force public bodies, such as research institutions or university libraries, to purchase digital content that belongs to the common cultural heritage.

As such, these partnerships constitute a commodification of the public domain by contractual means.

These kind of initiatives are typically justified on the grounds that there's no other way to digitize books and recordings. But that's clearly not true: money could be taken from other projects to pay for such work. It's really a question of priorities. These "public-private" partnerships come about because institutions like the Bibliothèque nationale de France have given up fighting for the public domain, despite being its guardians, and have acquiesced in its privatization.

It's a sad sign of the extent to which once-great libraries and galleries have been assimilated by the copyright industry and its culture of owning rather than sharing that they can't see why their complicity in this kind of enclosure of the knowledge commons is a deep betrayal of their origins and primary mission.

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Filed Under: culture, france, french national library, privatization, public domain

How The Entertainment Industry Is Killing Copyright

from the this-isn't-copyright dept

Law professor Jason Mazzone very kindly sent me a copy of his new book, Copyfraud and Other Abuses of Intellectual Property Law. It's sitting on my desk and is the next book I'm planning to read. However, he's also written up a fantastic post over at TorrentFreak, that describes how copyright has been privatized by the entertainment industry. He has two key examples of this:

1. Diminished copyright exceptions via contract: Thanks to the digital era, the entertainment industry likes to claim that you no longer purchase content, you merely "license" it. Thus, they're able to establish their own rules to govern what you do with the content, rather than relying on the boundaries of copyright law. As such, for the most part, many have tried to (a) claim copyright/control over more than they have a right to (b) deny you any fair use exceptions and (c) deny you your first sale rights to resell the products you "bought." In other words, by claiming that the sale is a "license" rather than a "sale," companies are effectively able to wipe out the important limitations on copyright.
2. Regulatory capture: The article highlights how copyright policy these days appears to be almost entirely driven by the entertainment industry, who is merely one beneficiary of the law -- but not the intended beneficiary (that would be the public). He uses the examples of the recent "voluntary" (at the strong urging of the White House) agreement between ISPs and the entertainment industry, as well as SOPA, which he notes just takes those "private" powers to extend copyright law even further:

   The Stop Online Piracy Act (SOPA), the companion bill to the Senate’s PROTECT IP Act, would further privatize adjudication and punishment. Title I of that law (dubbed the E-PARASITE Act) creates a “market-based system to protect U.S. customers and prevent U.S. funding of sites dedicated to theft of U.S. property.” It achieves this by empowering copyright owners who have a “good faith belief” that they are being “harmed by the activities” of a website to send a notice to the site’s payment providers (e.g. PayPal) and Internet advertisers to end business with the allegedly offending site.
   
   The payment providers and advertisers that receive the notice must stop transactions with the site. No judicial review is required for the notice to be sent and for the payments and advertising curtailed—only the good faith representation of the copyright owner. Damages are also not available to the site owner unless a claimant “knowingly materially” misrepresented that the law covers the targeted site, a difficult legal test to meet. The owner of the site can issue a counter-notice to restore payment processing and advertising but services need not comply with the counter-notice.
   
   There is also a catch: a site owner who issues a counter-notice automatically consents to being sued in U.S. courts (a strong disincentive for sites based abroad). With few checks at all, SOPA gives copyright owners a sharp tool to disrupt and shut down websites. Based on their past conduct, there is no reason to think that copyright owners will use this tool with any measure of restraint.

After thinking about this article for a little while, it finally hit me what's going on. While the entertainment industry and its supporters keep claiming that they're "strengthening copyright," nothing could be further from the truth. All of this is about the industry killing copyright. They're wiping out everything that's actually important about copyright law.

Think about it: the beneficiaries of copyright law are supposed to be the public. The mechanism is through limited-time, government-granted monopolies. But all that matters in copyright law is if the public is benefiting. Things like fair use and the first sale doctrine were added to copyright law to make sure that copyright law benefited the public. But when you look at the two situations described by Mazzone, you realize that everything the industry is doing is to make sure that copyright law no longer benefits the public at all, but rather all of the benefits accrue solely to a few gatekeepers. They're not strengthening copyright law at all, they're killing it. They're making it something entirely different than what it's intended to do... and in the process they're harming the public.

Filed Under: contracts, copyfraud, copyright, entertainment industry, fair use, first sale, privatization

The Privatization Of Public Data Sets A Bad Precedent

from the please-make-it-stop dept

Last summer we wrote about a troubling lawsuit filed by a company called Public Engines against a competitor called Report See. Each company runs their own open website that reports crime data. Public Engines runs CrimeReports.com. Report See runs SpotCrime.com. They have very different business models, however. CrimeReports is ad free. It makes its money because Public Engines signs expensive deals with local police departments around the country to take their crime data and format it for better use. SpotCrime, on the other hand, whose business model is based on advertising, collects whatever data it can from public sources, including police departments who publish the data, newspaper crime reports... and, at one point, the data it found on CrimeReports.com.

It's this bit that got CrimeReports.com so upset. It filed a lawsuit alleging a whole bunch of things, all of which seemed pretty questionable. There was a Computer Fraud and Abuse Act claim, which is the anti-hacking law that has been abused quite a lot recently. But there was no "hacking" going on here, as the data was (a) public data and (b) posted on an open website. Claiming that it's hacking to get the data is simply ridiculous. Then there was a breach of contract claim, but, of course, Public Engines has no contract with Report See, so again it's difficult to see this claim making any sense. Then things get bizarre. Public Engines claimed that SpotCrime violates a cyber-terrorism law. That one is so ridiculous it doesn't even need a response. On top of that there were false advertising and the once-again popular "hot news" claims -- again, neither of which makes any sense. There was no false advertising, and this is data, not news, so there's no hot news claim.

Unfortunately, however, it looks like the legal costs were a bit much for Report See and SpotCrime, and it finally agreed to settle the lawsuit, and drop the data, rather than get a ruling on the legality of it. While this doesn't set any sort of legal precedent, there are reasonable worries that it can and will create significant chilling effects in similar situations.

But the even larger issue is how this kind of privatization of public data is being allowed, and these kinds of ridiculous lawsuits create a path for these private companies to make such public data proprietary even though the courts have long rejected the idea of copyright on data collections. Without copyright, Public Engines was still able to break out a whole list of absolutely silly legal claims, and they were enough to get Report See to back down. This should be terrifying for anyone who believes in the importance of transparency in government and public data.

Oh, and one final point, just to ward off anyone who thinks that this data "needs" to be privatized in order to get it released to the public in the first place. That's simply ridiculous. First of all, it's entirely possible for police departments to figure out ways to release the data to the public directly, and I'm surprised that standard reporting software hasn't popped up yet, but I imagine it's only a matter of time. Second, the idea that CrimeReports.com couldn't compete against SpotCrime.com if it couldn't keep the data proprietary is simply ridiculous. First of all, if you compare the two websites directly, it's not hard to see that CrimeReports' website is simply nicer and much more user friendly. There's no reason it can't compete (and compete strongly) even if SpotCrime is copying its data.

Filed Under: crime reports, data, privatization, public data, spotcrime
Companies: public engines, report see

What Happened To The Expected Boom In Airport Security Tech?

from the the-gov't-doesn't-do-innovation dept

After 9/11, there was a lot of talk about how there was going to be a new boom in the airport security technology sector. People expected that investment would go into that field and we'd be seeing a lot of new innovative technologies to keep us all safer. Yet, here we are, over six years later, and there's very little in the way of new technologies hitting the market. Jim Harper points out that part of the problem is that the TSA, as a big gov't operation, has little incentive to improve security. Instead, he suggests, if the airlines themselves were responsible for security and liable for security failures, we'd suddenly see a lot more innovation.

Filed Under: airport security, privatization, security technology

Should We Privatize Copryight Registrations?

from the this-could-get-messy dept

While you have to register a trademark or a patent (and go through an approval process) with the Patent and Trademark Office, the same is not true for copyright. Thanks to changes in copyright law a while back, any new creative work automatically receives a copyright, once created. However, you can still register the work, with the main benefit of doing so is the ability to sue for infringement. Also, registering a copyright soon after the work is produced (and prior to someone infringing) opens up more possibilities in terms of the damages that you could sue for, if the content is infringed. That said, in an age of widespread content creation, very few individuals bother to register their copyright. I'd argue this is for a very good reason: that the benefits to doing so are quite small and many people aren't that concerned about the copyright on the works they create. However, some think this is a problem, and are proposing, as a solution, that we privatize the copyright registration system in the same way that the domain name registration system has been privatized (which has worked out just great, right?).

The main reasoning is that if private entities were in charge of handling copyright registrations, they'd have incentives to convince people that it would be worth their while to register their copyrights. In practice, this would be a huge disaster, however. The expansion of copyright has already taken its toll on our culture's ability to produce new content without liability, and if everyone is registering every random thing that they do online, expect the situation to get much, much worse. Think of the "patent troll" problem, but an order of magnitude worse. It would only serve to get more people thinking (incorrectly) about protecting content, rather than sharing content and helping to create more content. It would stifle creativity and content creation by setting up incentives for the opposite: for hoarding and limiting any use of content beyond the creator's use.

Filed Under: copyright, copyright registration, privatization