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|Friday, December 20th, 2013|
|Thursday, December 19th, 2013|
|Cecil Castelucci's Tin Star: first five chapters free
Every new Cecil Castellucci book is cause for celebration around here, and her latest, Tin Star -- the first volume in a new young adult science fiction series -- is no exception. Castellucci's got a gift for characters and dialog (this being part of her success in her extensive work in comics) and a stellar imagination. The story -- researched in part through workshops with NASA for science fiction writers -- is a tale of romance, escape and adventure on a remote space station where the charismatic leader of a colony ship is revealed for a monster.
The first five chapters of Tin Star are a free download (other formats here), so you can make up your own mind. But I know that my copy of Tin Star's going straight into my Christmas holiday reading pile.
On their way to start a new life, Tula and her family travel on the Prairie Rose, a colony ship headed to a planet in the outer reaches of the galaxy. All is going well until the ship makes a stop at a remote space station, the Yertina Feray, and the colonist's leader, Brother Blue, beats Tula within an inch of her life. An alien, Heckleck, saves her and teaches her the ways of life on the space station.
When three humans crash land onto the station, Tula's desire for escape becomes irresistible, and her desire for companionship becomes unavoidable. But just as Tula begins to concoct a plan to get off the space station and kill Brother Blue, everything goes awry, and suddenly romance is the farthest thing from her mind.
|EFF's holiday wishlist
The Electronic Frontier Foundation has posted its annual holiday wishlist of policy initiatives, business practices, and action by individuals. It's a kind of beautiful dream, and I long for the day that we attain it. And remember: everyone falls short of their ideals, but these are the best ideals to fall short of. I've included some of the wishes after the jump, but go read the full list.
Citizens, organizations, privacy officials, and governments should unite around the International Principles on the Application of Human Rights to Communications Surveillance and add their voices to declare that mass surveillance violates international human rights.
The U.S. Congress should create a new Church Committee to find out what intelligence agencies are actually doing; since mass surveillance is a global problem, we also need parliamentary commissions of inquiry around the world to look into the same question.
Congress should pass meaningful reform to the Computer Fraud and Abuse Act and the Electronic Communications Privacy Act.
The Department of Justice should notify everyone who's been convicted of a crime using evidence derived—directly or indirectly—from warrantless surveillance programs (not just a cherry-picked handful of defendants).
All communications companies should publish transparency reports showing the scope and nature of government requests for user information. The Internet industry, led by Google, has made this a standard for corporate transparency, but telecom companies are still totally missing in action.
All Internet sites should adopt cryptographic best practices for every connection, every time, including PFS, STARTTLS, HSTS, and encrypted traffic between data centers.
In 2014, every certificate authority and web browser should commit to adopt Google's Certificate Transparency system to detect and stop the issuance of fake certificates that facilitate spying on web users.
EFF's 2013 Holiday Wishlist
(Image: 618 - Party Lights, a Creative Commons Attribution (2.0) image from zooboing's photostream)
|New Disruptors 54: Wait a Cotton-Picking Minute
Jay Fanelli and Nathan Peretic know how to go it on their own. They've done it not just once, not just twice, but now three times. They formed the interactive-services company Full Stop Interactive, out of which United Pixelworkers was formed, a company that produces fine wearable merchandise. And United Pixelworkers gave birth to Cotton Bureau, a site that uses crowdfunding to pick which shirts should get printed. Now they're doubling down and focusing entirely on the T-shirt and merchandise businesses.
The New Disruptors: RSS | iTunes | Download this episode | Listen on Stitcher
Support The New Disruptors directly as a patron at Patreon starting at $1 for each podcast episode, with on-air thanks, premiums, and more at higher levels of support. We do this show with your help.
Things we mention in this episode:
Aaron Draplin runs his own design firm, Draplin Design Co., and collaborates with Jim Coudal on Field Notes. I interviewed Jim in January 2013 and Aaron in September 2013.
Pittsburgh defied the United States Board of Geographic Names to keep an h at the end of its name. Dribbble lets designers show off their work.
We talked through several different methods of T-shirt printing, including traditional silk screening and digital printing or direct-to-garment printing, in which something akin to an ink-jet printer outputs ink onto clothing.
The Incomparable T-shirts, with art by The Icon Factory, sold in the hundreds. If you see a zeppelin, you're probably in a parallel universe.
The New Disruptors is a podcast about people who make art, things, or connections finding new ways to reach an audience and build a community. Glenn Fleishman is the host, and he talks with new guests every week. Find previous episodes at the podcast's home.
|Chief cable lobbyist: data caps were never about network congestion, always about profit
Michael Powell used to be the head of the FCC. Now he's the cable operators' chief lobbyist. In a recent speech, he admitted that the cable operators' long-running push for caps on data-usage had nothing to do with congestion, which isn't really a problem for them. Instead, they pursued data-caps as a way of making more money from their customers.
Powell dressed this "making more money" stuff as fairness, as in "it's only fair that people who use more should pay more." But the cable operators have a curious relationship with "fairness" -- it's fair to charge you through the nose for being a "heavy" Internet user, but the people who only need the net to download an email or two a day aren't being offered the "fair" data-rate of a couple bucks a month.
National Cable and Telecommunications Association president Michael Powell told a Minority Media and Telecommunications Association audience that cable's interest in usage-based pricing was not principally about network congestion, but instead about pricing fairness...Asked by MMTC president David Honig to weigh in on data caps, Powell said that while a lot of people had tried to label the cable industry's interest in the issue as about congestion management. "That's wrong," he said. "Our principal purpose is how to fairly monetize a high fixed cost."
Except the argument that usaged pricing is about fairness has been just as repeatedly debunked. If usage caps were about "fairness," carriers would offer the nation's grandmothers a $5-$15 a month tier that accurately reflected her twice weekly, several megabyte browsing of the Weather Channel website. Instead, what we most often see are low caps and high overages layered on top of already high existing flat rate pricing, raising rates for all users. Does raising rates on a product that already sees 90% profit margins sound like "fairness" to you?
Another favorite industry argument is that providing broadband is so expensive for a carrier, the flat rate pricing model simply isn't sustainable, but that's also debunked if you eyeball quarterly earnings from any of the major broadband players. Yet another argument is that carriers are just "being creative" with pricing, but so far consumer wallets aren't feeling the creativity. What the industry's really doing is using the benefit of uncompetitive markets to price gouge customers, though Mike Powell obviously isn't paid to acknowledge that kind of reality at a press event.
Cable Industry Finally Admits Caps Not About Congestion [Karl Bode/DSL Report]
|Walk across New Hampshire with Larry Lessig and friends to fight corruption and reform campaign fina
Larry Lessig and friends are walking the length of New Hampshire for #NHRebellion, to reform campaign finance and try to end corruption in American politics (see Larry's excellent TED Talk about this, above). The two-week walk starts on January 11, the anniversary of Aaron Swartz's death. You can walk with Larry and the rest of the NHRebellion, or you can sponsor them (or both!).
The #NHRebellion was inspired by the late Doris Haddock, aka, Granny D, a citizen of New Hampshire, and who, at the age of 88, walked across the country with a simple sign on her chest: “campaign finance reform.”
Long before I came to the issue, Granny D was recruiting anyone she could to the critically important cause of changing the way campaigns are financed. She believed, as I do, that the current system is a kind of “corruption.” And she believed, as I have come to believe, that unless we find a way to change it, our government will be incapable of addressing sensibly any of the critical issues that it must resolve. Granny D devoted the last part of her life to this fight. The #NHRebellion will continue her work.
The point of the January march is to focus the citizens of New Hampshire on this critical issue of corruption, so that they in turn will focus the candidates in 2016 on corruption too. We will be asking people from across the state to ask the candidates they will inevitably meet over the next two years: “How will you end this corruption?” And the hope is that if New Hampshire makes this an issue, it might well become an issue for the nation as well.
from the the-burdens-of-being-Lessig’s-friend department
|UN adopts resolution in favor of digital privacy
The UN General Assembly has unanimously adopted a resolution called "The right to privacy in the digital age," introduced by Germany and Brazil. The resolution sets the stage for the adoption of broader privacy protection in UN treaties and resolution. The Electronic Frontier Foundation has written a set of (excellent) "People's Principles" (sign on here) for future work on digital privacy in the world.
The Principles make clear that:
* Critical Internet infrastructure must be protected: No law should impose security holes in our technology in order to facilitate surveillance. Dumbing down the security of hundreds of millions innocent people who rely on secure technologies in order to ensure surveillance capabilities against the very few bad guys is both overbroad and short-sighted. The assumption underlying such efforts—that no communication can be truly secure—is inherently dangerous, leaving people at the mercy of good guys and bad guys alike. It must be rejected.
* Monitoring equals surveillance: Much of the expansive state surveillance revealed in the past year depends on confusion over whether actual "surveillance" has occurred and thus whether human rights obligations apply. Some have suggested that if information is merely collected and kept but not looked at by humans, no privacy invasion has occurred. Others argue that computers analyzing all communications in real-time for key words and other selectors is not "surveillance" for purposes of triggering legal protections. These differences in interpretation can mean the difference between targeted and mass surveillance of communications. Definitions matter. States should not be able to bypass privacy protections on the basis of arbitrary definitions.
* We must protect metadata: It’s time to move beyond the fallacy that information about communications is not as privacy invasive as communications themselves. Information about communications, also called metadata or non-content, can include the location of your cell phone, clickstream data, and search logs, and is just as invasive as reading your email or listening to your phone calls—if not more so. What is important is not the kind of data is collected, but its effect on the privacy of the individual. Thus, the law must require high standards for government access. Our metadata needs to be treated with the same level of privacy as our content.
* Privacy must be protected across borders: Privacy protections must be consistent across borders at home and abroad. Governments should not bypass national privacy protections by relying on secretive informal data sharing agreements with foreign states or private international companies. Individuals should not be denied privacy rights simply because they live in another country from the one that is surveilling them. Where data is flowing across borders, the law of the jurisdiction with the greatest privacy protections should apply.
* We must restore proportionality: Authorities must have prior authorization by an independent and impartial judicial entity in order to determine that a certain act of surveillance has a sufficiently high likelihood to provide evidence that will address a serious harm. Any decisions about surveillance must weigh the benefits against the costs of violating an individual's privacy and freedom of expression. Respect for due process also requires that any interference with fundamental rights must be properly enumerated in law that is consistently practiced and available to the public. A judge must ensure that freedoms are respected and limitations are appropriately applied.
One Small Step for Privacy, One Giant Leap Against Surveillance
|UK's Great Firewall of Cameron blocks sexual health, rape crisis centre, sex ed sites
The unaccountable, multi-million-pound feel-good porn filters that UK ISPs were ordered to install by the Prime Minister are (predictably) grossly overblocking the Web. Among the (predictable) victims: sites related to sexual health, sex education, and pornography "addiction." Also, rape crisis centres. Done in one, Davey, you've kept the nation's children safe with your insane political posturing.
Among the sites TalkTalk blocked as "pornographic" was BishUK.com, an award-winning British sex education site, which receives more than a million visits each year.
TalkTalk also lists Edinburgh Women's Rape and Sexual Abuse Centre website as "pornographic."
The company also blocked a programme ran by sex education experts, taught to 81,000 American children that has been in development for more than 20 years.
TalkTalk's filter is endorsed by Mr Cameron but it failed to block 7% of the 68 pornographic websites tested by Newsnight.
Sky's filter fared much better, blocking 99% of sites, but it did block six porn-addiction sites.
Porn filters block sex education websites [Mike Deri Smith/BBC]
|Boars, Gore, and Swords podcast: Rowing Across the Trident? That’s a Paddlin’
Boars, Gore, and Swords is hosted by stand-up comedians Ivan Hernandez and Red Scott. In each episode they break down HBO's Game of Thrones and George R.R. Martin's A Song of Ice and Fire. They also talk about movies, TV, science fiction, fantasy, and lots of other things using foul language. In this episode, they discuss the Arya IX and Jon VI chapters of George R.R. Martin's A Storm of Swords (Catch up on past podcast episodes here to listen to previous chapter breakdowns). Also covered: Bannerman Shannon’s NaNoWriMo victory, the double-headed horse, Sandor the Stranger, Telltale Games’ upcoming Game of Thrones game, Wolfman Bran, and new character Noswym McDrownsalot.
GET BGaS: RSS | On iTunes | Download episode
|At 'The Houston Cancer Quack,' Skeptics call on Congress to investigate Stanislaw Burzynski
As regular readers of this blog know, I have cancer, and I believe the law should show no mercy to people who exploit cancer patients and their loved ones. While it's hard to imagine that someone could be so heartless, there are people in the world who profit from our fear, and the lack of education around science and evidence-based medicine. The result of this cruelty: our suffering and death.
One doctor who has been long the target of such "false hope" concern is Stanislaw Burzynski, of "antineoplaston" fame. The Houston-based provider was recently featured in a major investigative takedown in USA Today reported by health journalist Liz Szabo.
Today, Skeptic and pro-science crusader Robert Blaskiewicz shares news of thehoustoncancerquack.com, a new online campaign calling for a congressional investigation into the Burzynski Clinic, and an examination of why the FDA's reviews of their operations have led to little more than hand-slaps. Why is this guy still in business?
Robert Blaskiewicz writes:
The FDA recently released observation notes from a site inspection of the Burzynski Clinic in Houston, Texas. Stanislaw Burzynski is known for discovering, developing, manufacturing, prescribing, and dispensing (at an in-house pharmacy) a substance he calls “antineoplastons” (ANP), which he says can cure some cancers, including some difficult and devastating brain stem tumors.
Burzynski has also prescribed antineoplastons as an AIDS and lupus treatment.
In the mid ‘90s, during a trial that included 76 federal indictments, Burzynski’s legal team struck a deal with the FDA that stipulated that he could only dispense antineoplastons as part of clinical trials. He promptly opened a huge number of clinical trials.
According to his lawyer: “Burzynski personally put together seventy-two protocols to treat every type of cancer the clinic had treated and everything Burzynski wanted to treat in the future.“
Burzynski charges an enormous amount for the treatment, by recent accounts $30,000 to start and $7,500 per month thereafter. While patients may technically receive antineoplastons for free, the fees involved with being on this clinical trial are highly irregular.
Initial estimates for the cost of treatment run into the hundreds of thousands of dollars, and as most insurance companies don’t cover the costs of this unproven, unpromising treatment patients and families raise that money in any way they can, often reaching out to their communities for donations.
Most worrying is that of his more than 60 trials registered on the clinicaltrials.gov website, only one is listed as completed and it remains unpublished. From the point of view of cancer researchers, the status of research into antineoplastons as a cancer treatment is for all intents and purposes exactly where it was when the first trials were approved in the mid-1990s.
This year, the FDA's inspectors found a host of unthinkable research violations in Houston:
1) The FDA told Burzynski (as investigator, the subject of the inspection) “You failed to comply with protocol requirements related to the primary outcome, therapeutic response [...] for 67% of study subjects reviewed during the inspection.” This means that several patients who were reported as “complete responses” did not meet the criteria for that outcome defined in the investigational plan, as were patients who were reported as having a “partial response” and “stable disease.” No failure to comply with protocols for “progressive disease” are noted in the FDA’s observation report, only the outcomes that would suggest that ANP have had a therapeutic effect.
2) The FDA told Burzynski: “You failed to protect the rights, safety, and welfare of subjects under your care. Forty-eight (48) subjects experienced 102 investigational overdoses between January 1, 2005 and February 22, 2013, according to the [trial number redacted] List of Hospitalizations/SAE (serious adverse events) [redacted]/ Overdose [redacted]/Catheter Infection report. Overdose incidents have been reported to you [....] There is no documentation to show that you have implemented corrective actions during this time period to ensure the safety and welfare of subjects.” [emphasis added]
3) The FDA observed that patient records showed that many overdoses were not included in the Hospitalization/SAE/Overdose list. Patients who had Grade 3 or 4 (serious or life-threatening) toxic effects were supposed to be removed from treatment, according to Burzynski’s protocols. One patient had 3 Grade 3 events followed by 3 Grade 4 events. Another patient had 7 disqualifying toxic events before he was removed from the study. The FDA noted that Burzynski did not report all adverse events as required by his own study protocols. One patient had 12 events of hypernatremia (high sodium), none of which was reported.
4) The FDA observed: “Your [...] tumor measurements initially recorded on worksheets at baseline and on-study treatment [...] studies for all study subjects were destroyed and are not available for FDA inspectional review.” [emphasis added] This is one of the most damning statements, as without the baseline measurements how can anyone evaluate the outcomes? What respectable journal could possibly publish them?
What is more astounding is that this is not the first time FDA inspectors have noticed irregularities with Burzynski’s research practices; this is only the most recent example an uninterrupted, decade-long string of abysmal inspections (available here). Yet no action was ever taken to shut the research down. Indeed, while his clinic producing far more unimpressive inspection reports than completed trials, Burzynski somehow managed to gain approval for a Phase III clinical trial in children with brain tumors! (The trial is listed as withdrawn prior to enrollment.)
On November 15th, these findings, and others, were reported in a fine investigative series by Liz Szabo on the front page of USA Today, who interviewed Burzynski and asked him about criticism. His reply was frightening. According to Szabo:
"Burzynski dismisses criticism of his work, referring to his detractors as 'hooligans' and 'hired assassins.' As for criticism from former patients, Burzynski says, 'We see patients from various walks of life. We see great people. We see crooks. We have prostitutes. We have thieves. We have mafia bosses. We have Secret Service agents. Many people are coming to us, OK? Not all of them are the greatest people in the world. And many of them would like to get money from us. They pretend they got sick and they would like to extort money from us.'"
When asked about how Burzynski managed to pursue his research despite the repeated violations of his own protocols, the FDA has refused to disclose any information about how things were allowed to get so bad.
This is unacceptable.
Last week, after nine months, the FDA finally released two warning letters, one addressed to the Burzynski’s Institutional Review Board (staffed mostly by Burzynski’s pals) and Burzynski himself.
His entire organization seems to have roundly failed to satisfy the FDA that his results are reliable and that his patients are protected. Further, and this is highly irregular, the FDA notes:
The records BRI submitted to FDA on [DATE REDACTED], were not in the files that you provided regarding Patient 022387 during the inspection. However, during the inspection, you provided other Case Report Forms for this patient, with the same titles and for the same visit date as noted above, but containing information that differed from that which BRI submitted to FDA. [...] Please explain why the Case Report Forms at your site for Patient 022387 differed from the Case Report Forms that Burzynski Research Institute submitted to FDA’s Division of Oncology Products 2.
This is staggering, honestly, and I’m certain that the FDA was not impressed by such imaginative record keeping.
Despite all this, Burzynski will still show up for work tomorrow morning and continue seeing patients, just as he has done for decades.
The Skeptics for the Protection of Cancer Patients, who have collected dozens of appalling stories from Burzynski’s patients, are currently pressing for a congressional investigation into the approval process for research done by Burzynski. We want to find out what went wrong and fix it to protect the most vulnerable and desperate cancer patients.
To give you a sense of how desperate these patients are and how badly we need your help to end this, consider the fact that even after the devastating USA Today cover story, patients are still gathering thousands of signatures from well-meaning but uninformed strangers demanding access to the treatment.
What happened in Houston can not be allowed to happen again. We are asking cancer patients, their families, and their loved ones to write to their representatives in Washington, to put the inspection notes into legislators' hands, and to ask them to call for an investigation into the clinic. We've set up a website, thehoustoncancerquack.com, where we have draft letters for your representatives and all the supporting documents that your representatives will need to come to a decision. We also have feedback forms so that we can monitor the responses and run as efficient and targeted campaign as possible.
Besides contacting your representatives, you may also want to contact a certain key committees and caucuses on Capitol Hill. These include the House Cancer Caucus (co-chaired by Steve Israel of New York and Lois Capps of New York), the Senate Cancer Coalition (chaired by Dianne Feinstein), and especially the Childhood Cancer Caucus (co-chaired by Michael McCaul of Texas and Chris Van Hollen of Maryland). It is important to ask members to support more urgent research into rare childhood brain tumors. As it stands, there are not a lot of good treatments for these tumors, and we want desperate parents to feel like they have better options than the hocus pocus in Houston.
If medical professionals decide, after reviewing the evidence, that the Burzynski Clinic represents a danger to public health, they should write to the Texas Medical Board. There are procedures in place that can be invoked in extreme circumstances that could protect prospective patients, but they need to be initiated by either doctors or patients.
As Liz Szabo’s USA Today piece made clear, when patients who end up destitute and stranded in Houston with dying children, they often end up at Texas Children’s Hospital. The hospital has a charity, the Kangaroo Crew, that flies home children who need continual medical attention free of charge. If you would like to directly mitigate some of the suffering caused by Burzynski’s “everything but the squeal” business model of patient exploitation, please donate to the Kangaroo Crew. It would be wonderful to take the misery engendered by the Burzynski Clinic and turn it into something positive for children with cancer this Christmas.
We are also looking to ally ourselves with established cancer patient advocacy and consumer protection groups. Concerned members of the international community can help too by promoting reliable information about antineoplastons and Burzynski online. We have developed SEO-savvy strategies for making good content visible online. Two of our more urgent needs are volunteers to translate Burzynski’s Wikipedia page into Chinese, Polish, and other languages. If you can help with this please contact the Guerilla Skeptics on Wikipedia.
Email: You can contact the Skeptics for the Protection of Cancer Patients at firstname.lastname@example.org.
Video: For more detailed background on this issue, please see the “Why We Fight” lectures by me and oncologist David Gorski:
Part I (Gorski)
Part II (Blaskiewicz)
|Display case with false bookcase doors
Dan Tappo's seven-year-old son has a "mini-museum" of curios he's collected ("rocks, fossils, marbles, old film canisters"). For Christmas, Dan's built him a secret display cabinet hidden behind a false-front bookcase. He built a set of cheap Ikea shelves, fit hinged doors to it, and then surfaced them with sliced-off book-spines from old discards. Great maker parenting, Dan!
* On the sides at the front, attach two pieces of planed timber. You’ll be hinging the ‘bookcase’ doors onto this timber because the Expedit doesn’t have the structural integrity to hold the hinges (at least I assumed it didn’t). The timber I used was 34mmx34mm. I used that size only because the hardware store I went to had a bolt-screw that was exactly 34mm longer than the screw that comes with the Expedit unit. This meant I could screw through the timber into the Expedit and hold it together exactly as securely as normal. I then painted the timber white.
* The book case doors are 12mm MDF painted white (although timber would be better and a bit thinner better again). The ‘bookcase edges’ are planed timber 25mm x 25mm and then shelves are 25mm x 15mm. I cut all the pieces to size first – the doors, then the bookcase parts and then the books. I nailed the bookcase into place from the book and as for the books, I just cut them on a bandsaw and then glued them into place.
* I used 3 hinges per side to hang the doors but that was overkill – 2 would have been fine.
Fake bookcase hides secret cabinet