It works like this. Say you want to test the effectiveness of a new screening method. You recruit a large group of women and you split them into two groups. One group gets the screening regularly. The other, the control group, doesn't get the screening. Then you follow them over time and track how many women in both groups died of cancer. That's a pretty basic scientific method. It's also something that prompts big questions about the treatment of women in the control group.

The people conducting the study say women in the control group were told they could seek out screening on their own. Critics argue that point (and the way the study worked) wasn't clearly explained, and that those alterante options weren't as available to the women as researchers imply. The majority of the women participating in the studies are poor and have very little formal education.

There are some important differences between this and the infamous Tuskegee syphilis experiment. In that case, researchers identified men with syphilis and neither told them about their disease nor offered them treatment — just monitored the deadly disease's progress. Here, there's clearly an attempt (however poorly executed) at being open with the women about what the study is and what is being done. And nobody is intentionally trying to prevent sick women from being treated. But the study definitely exists in an uncomfortable space and could reasonably be called unethical. Is it ever okay to not screen people for a disease that are pretty sure some of them have? If not, how do we figure out whether potentially life-saving screening methods are actually useful? How do you do statistics ethically when people are the numbers? I don't have good answers for these questions.

Here's what we do know. There are 76,000 women enrolled in the National Cancer Institute study, and another 31,000 in The Gates Foundation study. So far, they've been tracked for 12 years and at least 79 of the women in the control groups have died of cervical cancer.

Read Bob Ortega's full story at The Arizona Republic

This is a really important long read that we all need to pay attention to. It concerns how we treat people with who are suffering from paranoid delusions — and how we treat people whose families worry that they are a threat to others. It concerns the relationships between doctors and the pharmaceutical industry. It concerns the ethics of clinical trials — the risks we run as we test potential treatments that could help many, or hurt a few, or both. If we want to reform mental health care, this needs to be part of the discussion.

In 2004, Dan Markingson committed suicide. The story behind that death is complicated and depressing. At the Molecules to Medicine blog, Judy Stone documents the whole thing in three must-read chapters. Many people find help in psychiatric drugs, and credit those drugs with making their lives better. (Full disclosure, I'm one of them. I have used Ritalin for several years. I am temporarily on an anti-depressant.) But we have to pay attention to how those drugs get to us. This isn't just about treating people. It's about the process that gets us there. Because, if that process is compromised, the treatments we get won't be as effective and lives will be lost along the way.

Markingson began to show signs of paranoia and delusions in 2003, believing that he needed to murder his mother. He was committed to Fairview Hospital involuntarily after being evaluated by Dr. Stephen Olson, of the University of Minnesota. He was subsequently enrolled on a clinical trial of antipsychotic drugs—despite protests from his mother. This study was a comparison of atypical antipsychotics for the treatment of first episodes of schizophrenia (aka the CAFÉ study), sponsored by AstraZeneca. The study’s structure was that of a Phase 4 randomized, double-blind trial comparing the effectiveness of three different atypical antipsychotic drugs: Zyprexa (olanzapine), Risperdal (risperidone) and Seroquel (quetiapine), with each patient to be treated for a year.

After about two weeks on study treatment in the hospital, Markingson was discharged to a halfway house—again over his mother’s objections. Over the coming months, Dan’s mother, Mary Weiss, continued to express concerns about her son’s deterioration, even asking if her son might have to kill himself before anyone else would take notice…then, in fact, her son violently committed suicide on May 7, 2004, mutilating himself with a box cutter. The University of Minnesota and their IRB have maintained that the study was conducted appropriately and that they have no responsibility for Dan’s death. Dan’s mother and bioethicist Carl Elliott believe otherwise.

We’ll explore some of the major issues of contention in this case over several posts, as illustrative of basic clinical research principles, including adequacy of informed consent, IRB oversight, conflicts of interest, and coercion, including threats to a bioethicist whistleblower.

Read the first part of the story

Read the second part: How clinical trials should be done and how they were done in this case.

Read the third part: Conflicts of interest between the researchers and the pharmaceutical industry.

Image: Pills (white rabbit), a Creative Commons Attribution (2.0) image from erix's photostream

In the New Yorker, an essay by Gary Marcus on the ethical and legal implications of Google's driver-less cars which argues that these automated vehicles "usher in the era in which it will no longer be optional for machines to have ethical systems."

Marcus writes,

Your car is speeding along a bridge at fifty miles per hour when errant school bus carrying forty innocent children crosses its path. Should your car swerve, possibly risking the life of its owner (you), in order to save the children, or keep going, putting all forty kids at risk? If the decision must be made in milliseconds, the computer will have to make the call.

In one study, 50 patients with chronic back pain were randomly divided into two groups before a leg flexion test. One group was informed that the test could lead to a slight increase in pain, while the other group was instructed that the test would have no effect. Guess which group reported more pain and was able to perform significantly fewer leg flexions?

Another example from the report: Patients undergoing chemotherapy for cancer treatment who expect these drugs to trigger intense nausea and vomiting suffer far more after receiving the drugs than patients who don’t.

And, like placebos and classic nocebos, this isn't just "all in their head"—at least, not in the sense that they're making it up or deluding themselves. There are measurable physical effects to this stuff.

As science writer Steve Silberman says in the article I've quoted from above, what we're learning here is that the feedback we get from other people ("That might make you feel yucky" or "You look tired today") has a physical effect on us. It's a little insane. It's also worth thinking about when we talk about medical ethics. Full disclosure of what treatments you're getting and what the risks and benefits are is generally regarded as the ethically right way to practice medicine. And that's probably correct. But how do you balance that with what we know about placebo/nocebo? What happens when transparency keeps you from using a harmless placebo as a treatment? What happens when transparency makes you more likely to experience negative health outcomes? It's a strange, strange world and it's not always easy to make the right ethical choices.

Read Steve Silberman's full story on the nocebo effect

StarShipSofa No 244 Peter Watts/MP3 (Thanks, Tony!) ]]> http://boingboing.net/2012/06/27/peter-wattss-drone-ethics-st.html/feed 2 http://boingboing.net/2012/06/16/market-for-zero-day-vulnerabil.html http://boingboing.net/2012/06/16/market-for-zero-day-vulnerabil.html#comments Sun, 17 Jun 2012 00:00:44 +0000 Cory Doctorow http://boingboing.net/?p=166607 In this Forbes editorial, Bruce Schneier points out a really terrible second-order effect of the governments and companies who buy unpublished vulnerabilites from hackers and keep them secret so they can use them for espionage and sabotage. As Schneier points out, this doesn't just make us all less secure (EFF calls it "security for the 1%") because there are so many unpatched flaws that might be exploited by crooks; it also creates an incentive for software engineers to deliberately introduce flaws into the software they're employed to write, and then sell those flaws to governments and slimy companies.

I’ve long argued that the process of finding vulnerabilities in software system increases overall security. This is because the economics of vulnerability hunting favored disclosure. As long as the principal gain from finding a vulnerability was notoriety, publicly disclosing vulnerabilities was the only obvious path. In fact, it took years for our industry to move from a norm of full-disclosure — announcing the vulnerability publicly and damn the consequences — to something called “responsible disclosure”: giving the software vendor a head start in fixing the vulnerability. Changing economics is what made the change stick: instead of just hacker notoriety, a successful vulnerability finder could land some lucrative consulting gigs, and being a responsible security researcher helped. But regardless of the motivations, a disclosed vulnerability is one that — at least in most cases — is patched. And a patched vulnerability makes us all more secure.

This is why the new market for vulnerabilities is so dangerous; it results in vulnerabilities remaining secret and unpatched. That it’s even more lucrative than the public vulnerabilities market means that more hackers will choose this path. And unlike the previous reward of notoriety and consulting gigs, it gives software programmers within a company the incentive to deliberately create vulnerabilities in the products they’re working on — and then secretly sell them to some government agency.

No commercial vendors perform the level of code review that would be necessary to detect, and prove mal-intent for, this kind of sabotage.

The Vulnerabilities Market and the Future of Security (via Crypto-gram) ]]> http://boingboing.net/2012/06/16/market-for-zero-day-vulnerabil.html/feed 16 http://boingboing.net/2012/05/30/why-ethical-people-commit.html http://boingboing.net/2012/05/30/why-ethical-people-commit.html#comments Wed, 30 May 2012 23:43:09 +0000 Cory Doctorow http://boingboing.net/?p=163654 An All Things Considered segment (MP3) with Chana Joffe-Walt and Alix Spiegel looks at the circumstances that lead to people cheating and committing other frauds. They frame it with the true story of Toby Groves, whose brother had been convicted of fraud, and whose father made him swear a solemn oath to be upstanding in his business dealings. However, Groves found himself committing fraud later, and brought several of his employees in on it.

Typically when we hear about large frauds, we assume the perpetrators were driven by financial incentives. But psychologists and economists say financial incentives don't fully explain it. They're interested in another possible explanation: Human beings commit fraud because human beings like each other.

We like to help each other, especially people we identify with. And when we are helping people, we really don't see what we are doing as unethical.

Lamar Pierce, an associate professor at Washington University in St. Louis, points to the case of emissions testers. Emissions testers are supposed to test whether or not your car is too polluting to stay on the road. If it is, they're supposed to fail you. But in many cases, emissions testers lie.

"Somewhere between 20 percent and 50 percent of cars that should fail are passed — are illicitly passed," Pierce says.

Financial incentives can explain some of that cheating. But Pierce and psychologist Francesca Gino of Harvard Business School say that doesn't fully capture it.

Psychology Of Fraud: Why Good People Do Bad Things ]]> http://boingboing.net/2012/05/30/why-ethical-people-commit.html/feed 19 http://boingboing.net/2012/05/22/spoiler-indie-after-the-zombi.html http://boingboing.net/2012/05/22/spoiler-indie-after-the-zombi.html#comments Tue, 22 May 2012 16:53:48 +0000 Cory Doctorow http://boingboing.net/?p=162321

Spoiler is an independently produced 17-minute horror/science fiction movie that illuminates the kinds of cold equations that have to be solved in pandemic outbreaks. In this case, it's the story of the coroners who keep the zombie plague under control after it's been beaten back. It's a good twist on the traditional zombie movie, and hits a sweet spot of sorrow and horror that you get with the best zombie stories.

The zombie apocalypse happened -- and we won.

But though society has recovered, the threat of infection is always there -- and Los Angeles coroner Tommy Rossman is the man they call when things go wrong.

Spoiler (Thanks, Ben!) ]]> http://boingboing.net/2012/05/22/spoiler-indie-after-the-zombi.html/feed 28 http://boingboing.net/2012/05/01/facebook-launches-organ-farmvi.html http://boingboing.net/2012/05/01/facebook-launches-organ-farmvi.html#comments Wed, 02 May 2012 01:18:40 +0000 Xeni Jardin http://boingboing.net/?p=157900 according to this New York Times story, is to "create peer pressure to nudge more people to add their names to the rolls of registered donors." Absolutely nothing could go wrong. (via John Schwartz)]]> http://boingboing.net/2012/05/01/facebook-launches-organ-farmvi.html/feed 22 http://boingboing.net/2012/03/21/doc-blasts-mandatory-transvagi.html http://boingboing.net/2012/03/21/doc-blasts-mandatory-transvagi.html#comments Wed, 21 Mar 2012 21:53:53 +0000 Cory Doctorow http://boingboing.net/?p=150466 An anonymous MD has a guest-post on John Scalzi's blog describing her/his medical outrage at being asked to perform medically unnecessary transvaginal ultrasounds on women seeking abortion, in accordance with laws proposed and passed by several Republican-dominated state legislatures. As the doctor writes, "If I insert ANY object into ANY orifice without informed consent, it is rape. And coercion of any kind negates consent, informed or otherwise." The article is a strong tonic and much-welcome -- the ethics of medical professionals should not (and must not) become subservient to cheap political stunting, and especially not when political stunt requires doctors' complicity in state-ordered sexual assaults.

1) Just don’t comply. No matter how much our autonomy as physicians has been eroded, we still have control of what our hands do and do not do with a transvaginal ultrasound wand. If this legislation is completely ignored by the people who are supposed to implement it, it will soon be worth less than the paper it is written on.

2) Reinforce patient autonomy. It does not matter what a politician says. A woman is in charge of determining what does and what does not go into her body. If she WANTS a transvaginal ultrasound, fine. If it’s medically indicated, fine… have that discussion with her. We have informed consent for a reason. If she has to be forced to get a transvaginal ultrasound through coercion or overly impassioned argument or implied threats of withdrawal of care, that is NOT FINE.

Our position is to recommend medically-indicated tests and treatments that have a favorable benefit-to-harm ratio… and it is up to the patient to decide what she will and will not allow. Period. Politicians do not have any role in this process. NO ONE has a role in this process but the patient and her physician. If anyone tries to get in the way of that, it is our duty to run interference.

Guest Post: A Doctor on Transvaginal Ultrasounds ]]> http://boingboing.net/2012/03/21/doc-blasts-mandatory-transvagi.html/feed 54 http://boingboing.net/2012/03/09/the-case-for-dolphin-rights.html http://boingboing.net/2012/03/09/the-case-for-dolphin-rights.html#comments Fri, 09 Mar 2012 18:34:42 +0000 Maggie Koerth-Baker http://boingboing.net/?p=148232

Recently, I posted a series of videos where science writers talked about some of the fascinating things they learned at the 2012 American Association for the Advancement of Science conference. In one of those clips, Eric Michael Johnson talked a bit about a panel session on whether or not certain cetaceans—primarily whales and dolphins—deserve to have legal rights under the law, the same as people have.

This is an issue that just begs controversy. But in a recent blog post following up on that panel and the meaning behind it, Johnson explains that it's not quite as crazy an idea as it might at first sound.

It was just this understanding of rights as obligations that governments must obey that formed the basis for a declaration of rights for cetaceans (whales and dolphins) at the annual meeting of the American Association for the Advancement of Science held in Vancouver, Canada last month. Such a declaration is a minefield ripe for misunderstanding, as the BBC quickly demonstrated with their headline, “Dolphins deserve same rights as humans, say scientists.” However, according to Thomas I. White, Conrad N. Hilton Chair of Business Ethics at Loyola Marymount University in Los Angeles, the idea of granting personhood rights to nonhumans would not make them equal to humans under law. They would not vote, sit on a jury, or attend public school. However, by legally making whales and dolphins “nonhuman persons,” with individual rights under law, it would obligate governments to protect cetaceans from slaughter or abuse.

“The evidence for cognitive and affective sophistication—currently most strongly documented in dolphins—supports the claim that these cetaceans are ‘non-human persons,’” said White. As a result, cetaceans should be seen as “beyond use” by humans and have “moral standing” as individuals. “It is, therefore, ethically indefensible to kill, injure or keep these beings captive for human purposes,” he said.

Johnson also makes an interesting point—there's a legal basis for this kind of thing. After all, if corporations can be people, my friends, why not dolphins?

We don’t yet have a commercially available “thinking cap” but we will soon. So the research community has begun to ask: What are the ethics of battery-operated cognitive enhancement? Last week a group of Oxford University neuroscientists released a cautionary statement about the ethics of brain boosting, followed quickly by a report from the UK’s Royal Society that questioned the use of tDCS for military applications. Is brain boosting a fair addition to the cognitive enhancement arms race? Will it create a Morlock/Eloi-like social divide where the rich can afford to be smarter and leave everyone else behind? Will Tiger Moms force their lazy kids to strap on a zappity helmet during piano practice?

After trying it myself, I have different questions. To make you understand, I am going to tell you how it felt. The experience wasn’t simply about the easy pleasure of undeserved expertise. When the nice neuroscientists put the electrodes on me, the thing that made the earth drop out from under my feet was that for the first time in my life, everything in my head finally shut the fuck up.

The experiment I underwent was accelerated marksmanship training on a simulation the military uses. I spent a few hours learning how to shoot a modified M4 close-range assault rifle, first without tDCS and then with. Without it I was terrible, and when you’re terrible at something, all you can do is obsess about how terrible you are. And how much you want to stop doing the thing you are terrible at.

Then this happened:

The 20 minutes I spent hitting targets while electricity coursed through my brain were far from transcendent. I only remember feeling like I had just had an excellent cup of coffee, but without the caffeine jitters. I felt clear-headed and like myself, just sharper. Calmer. Without fear and without doubt. From there on, I just spent the time waiting for a problem to appear so that I could solve it.

If you want to try the (obviously ill-advised) experiment of applying current directly to your brain, here's some HOWTOs. Remember, if you can't open it, you don't own it!

Better Living Through Electrochemistry (via JWZ) ]]> http://boingboing.net/2012/03/04/what-its-like-to-wear-a-brai.html/feed 91 http://boingboing.net/2012/01/21/undercover-uk-cops-infiltrated.html http://boingboing.net/2012/01/21/undercover-uk-cops-infiltrated.html#comments Sat, 21 Jan 2012 10:39:54 +0000 Cory Doctorow http://boingboing.net/?p=140023 Undercover police agents in the UK infiltrated environmental groups, had sex with their members, struck up long-term relationships with women in these groups, fathered children with these women, and then abandoned the children.

Two undercover police officers secretly fathered children with political campaigners they had been sent to spy on and later disappeared completely from the lives of their offspring, the Guardian can reveal.

In both cases, the children have grown up not knowing that their biological fathers – whom they have not seen in decades – were police officers who had adopted fake identities to infiltrate activist groups. Both men have concealed their true identities from the children's mothers for many years.

Good thing the police were there, though. Who knows what kind of unethical behaviour an environmentalist might be getting up to.

Undercover police had children with activists ]]> http://boingboing.net/2012/01/21/undercover-uk-cops-infiltrated.html/feed 88 http://boingboing.net/2012/01/13/scary-science-national-securi.html http://boingboing.net/2012/01/13/scary-science-national-securi.html#comments Fri, 13 Jan 2012 19:42:40 +0000 Maggie Koerth-Baker http://boingboing.net/?p=138880 I've been following the story about the scientists who have been working to figure out how H5N1 bird flu might become transmissible from human to human, the controversial research they used to study that question, and the federal recommendations that are now threatening to keep that research under wraps. This is a pretty complicated issue, and I want to take a minute to help you all better understand what's going on, and what it means. It's a story that encompasses not just public health and science ethics, but also some of the debates surrounding free information and the risk/benefit ratio of open-source everything.

H5N1, the famous bird flu, is deadly to humans. Of the 566 people who have contracted this form of influenza, 332 have died. But, so far, the people who have caught bird flu don't seem to have contracted the disease from other humans, or passed it on. Instead, they got it from birds, often farm animals with whom the victims were living in close contact. H5N1 was first identified 14 years ago, and there's never been a documented case of it being passed from person to person.

But that doesn't mean such a leap is impossible.

That's because of how the influenza virus works. Influenza is made up of eight pieces of RNA, containing 10 genes, and they all replicate independently of one another and there's no system for error correction*. That means you have more opportunity for mutations to arise that change what the virus does and who it can infect. Think of it like dice. Genetic replication is like putting a die in a jar, shaking it up and seeing what you get. Everybody does that. But influenza has eight die, not one. So it accumulates mutations faster. As a bonus, influenza viruses that infect the same host can share genes—essentially creating a baby virus that carries traits from different parents.

That's why, despite 14 years of relatively low-risk behavior, scientists are still concerned about what H5N1 might do in the future. All it would take, theoretically, is the right roll of the dice, and suddenly you have a flu virus with a 60% kill rate that can pass from person to person.

At least, theoretically. Could that actually happen? And, if so, how likely is it that the "right" bad combination of genes will come up? You can see why these are important questions to ask, and that brings us to the controversy.

Studying the genetics of H5N1 is nothing new. Its genome has been sequenced since 2004, for instance. But, until 2011, nobody had ever tested out a pretty fundamental idea in the control and management of H5N1: The theory that its genetics prevented it from simultaneously being both super deadly and passed from person to person.

That theory hinged on what we know about one of the proteins in H5N1. Specifically, the protein designated H5. Here's the LA Times:

Strains carrying the H5 type of a key influenza protein that helps the virus bind to cells in a host had never evolved to travel through the air from person to person. Even if H5N1 did evolve such an ability, some researchers reasoned that it might do so at the expense of its ability to take hold deep in the lung. And that would make it less lethal.

As one scientist described it to the LA Times, this theory was, basically, "We've not seen this happen before so it can't happen." But that's not a particularly strong basis on which to pin all your fears about a global pandemic.

That's why researchers in Europe and the U.S. decided to try something risky—see whether they could prompt existing H5N1 viruses to mutate into the very thing everybody's been dreading. Nobody knows a lot about this research, but, at Slate.com, Carl Zimmer explains what is known:

They’ve carried out their experiments on ferrets, which respond to flu viruses much like humans do. What few details we know of the unpublished research comes from a talk Dutch virologist Ron Fouchier gave in August at a virology conference, along with subsequent news reports. Fouchier began the experiment by altering the H5N1 virus’s genes in two spots. Then he passed the virus from one ferret to another, allowing the virus to mutate and evolve on its own inside the animals. After several rounds, Fouchier ended up with an H5N1 virus that could spread through the air from one ferret to the other. If unleashed—and if proven capable of spreading from human to human with the same high mortality rate—it could make the deadly 1918 pandemic look like a pesky cold.

So that's one part of the controversy. Was this a responsible thing to do?

On the one hand, zomgwe'reallgonnadierunhide, right? On the other, this research has already taught us something really, really important. Not only can H5N1 make the leap to mammal-to-mammal transmission, but it did so faster and easier than the researchers had guessed. Knowing that matters, because it could help public health officials make better plans for where to use limited resources, and it could help other scientists figure out a way to fight a human transmissible H5N1 pandemic if it did happen in nature. But, if I may flip the waffle back over again, there are some legitimate scientists who don't think the benefits outweigh the risks of creating this thing. Carl Zimmer again:

Ian Lipkin, the director of the Center for Infection and Immunity at Columbia University, believes there’s no reason to assume that the mutations that arose in Fouchier’s experiments would be the ones that would arise out in the real world. “On the other hand,” Lipkin says, “publishing this information would give people a roadmap to creating Frankenstein viruses.”

And that brings us to the other part of the controversy: What to do with Fouchier's research.

This is where the government gets involved. These studies were funded by the National Institutes for Health. When NIH got the papers, they passed them on to the National Science Advisory Board for Biosecurity. On December 20, the NSABB recommended that Fouchier's study, and a similar one conducted by the University of Wisconsin's Yoshihiro Kawaoka, only be published once key data and details are removed, effectively rendering the studies un-reproducible.

The board can't technically force this. But the board is also a big deal and so Science, Nature, the NIH, and the paper's authors are all listening. That's why the papers haven't actually been published yet. The people involved are still figuring out how to handle them.

This matters a lot. Reproducibility—being able to read another scientist's research paper and independently test out their conclusions—is a key part of how science works. Remove that element, and it becomes harder to verify claims like this, not to mention much harder to actually get the benefits out of this risky research. The people involved are trying to work out a system under which qualified scientists could have access to the full data, but others say that isn't good enough. Especially considering the fact that H5N1 wouldn't make the best bioterrorism tool, anyway. Peter Christian Hall writing for Reuters:

[No one in the history of biological weapons] ever tried to weaponize a flu strain—for good reason.

Influenza in general is an equal-opportunity menace, particularly dangerous when a strain is so unfamiliar that humanity lacks immunity to it. This would put at great risk anyone trying to assemble a pandemic H5N1 to launch at “target” populations. Indeed, such an attack would unleash global contagion that would swiftly and inevitably incapacitate an aggressor’s own people. Influenza doesn’t respect borders.

Even arguably irrational terrorists like Aum Shinrikyo never got into anything near as notoriously unpredictable and uncontrollable as the flu, Hall writes. Of course, his argument is pretty similar to the one scientists used to use to reassure themselves that H5N1 couldn't be both deadly and human transmissible: We've not seen this happen before, so it won't.

Of course, it's also worth pointing out that these experiments were a lot more technologically complex than the short description here makes them sound. This isn't just about taking a bunch of ferrets and making them sick. It required some serious lab equipment that not just anybody has access to.

Moreover, this isn't the first time scientists have made a deadly flu virus in the lab. Back in 2005, a team reverse-engineered the 1918 pandemic flu. After a lot of debate, their research was eventually published in full, reproducible form. Peter Palese was one of the scientists on that team, and he's written an essay on Nature about his experience, as part of a plea to publish the H5N1 research in full, too.

He makes a case both for the importance of risky research, and for why all science (even kind of scary science) needs to remain open source.

During our discussions with members of the NSABB, we explained the importance of bringing such a deadly pathogen back to life. Although these experiments may seem dangerously foolhardy, they are actually the exact opposite. They gave us the opportunity to make the world safer, allowing us to learn what makes the virus dangerous and how it can be disabled. Thankfully, the discussions were largely constructive — within a week, the NSABB recommended that we continue to study the virus under biocontainment conditions, and publish the results so that other scientists could participate in the research. After we published our full paper in 2005, researchers poured into the field who probably would not otherwise have done, leading to hundreds of papers about the 1918 virus. As a result, we now know that the virus is sensitive to the seasonal flu vaccine, as well as to the common flu drugs amantadine (Symmetrel) and oseltamivir (Tamiflu). Had we not reconstructed the virus and shared our results with the community, we would still be in fear that a nefarious scientist would recreate the Spanish flu and release it on an unprotected world. We now know such a worst-case scenario is no longer possible.

I make the same argument today that we made in 2005 — publishing those experiments without the details is akin to censorship, and counter to science, progress and public health. ... Giving the full details to vetted scientists is neither practical nor sufficient. Once 20–30 laboratories with postdoctoral fellows and students have such information available, it will be impossible to keep the details secret. Even more troublesome, however, is the question of who should decide which scientists are allowed to have the information. We need more people to study this potentially dangerous pathogen, but who will want to enter a field in which you can't publish your most scientifically interesting results?

Recoding Innovation is a National Science Foundation-funded documentary that's basically about the anthropology of science and engineering.

If you're a scientist or an engineer, you can participate. How does your culture, values, and beliefs make your work happen? The idea here is that ethics aren't something that hold science back. Instead, applying ethics helps scientists and engineers be innovative. It's a cool idea, and I'm looking forward to watching the finished documentary. The video above includes a short example of the kind of stories the editors are looking for.

Submit your story by January 1.

Video Link

The Kimberley Academy in Montclair, New Jersey hosted a fascinating, one-hour chat between Neil DeGrasse Tyson -- Hayden Planetarium director, TV science host, and all-round good guy -- with Stephen Colbert in a rare, out-of-character appearance.

Stephen Colbert Interview - Montclair Kimberley Academy (via Kottke) ]]> http://boingboing.net/2011/11/29/neil-degrasse-tyson-interviewe.html/feed 27 http://boingboing.net/2011/11/28/representative-from-burzynski.html http://boingboing.net/2011/11/28/representative-from-burzynski.html#comments Mon, 28 Nov 2011 19:59:07 +0000 Cory Doctorow http://boingboing.net/?p=131917 Houston's Burzynski Clinic is a cancer-treatment facility specializing in "antineoplaston therapy," a treatment involving urine developed 34 years ago by the clinic's founder, Stanislaw Burzynski. Mr Burzynski characterizes his treatments as "clinical trials." After 34 years' worth of these trials, I can find no record of randomized double-blind studies demonstrating this treatment's efficacy being published.

Many people are skeptical of "antineoplaston therapy," which has led to several skeptical posts about the clinic, and the ethics of offering an unproven treatment (which can cost £200,000, a fact that came to light when a UK family ran a fundraiser to get their child treated there) to families who fear for their loved ones' lives. An apparent representative of the clinic calling himself Marc Stephens has written to several of these skeptics threatening them with libel claims. In one case, he apparently sent a letter to the father of a newborn, threatening not just the critic, but his critic's family.

The people who've received missives from Mr Stephens can't locate any indications of his being admitted to the bar in Texas, though he implies that he is a lawyer ("So, when I present to the juror that my client and his cancer treatment has went up against 5 Grand Juries which involved the Food and Drug Administration (FDA), the National Cancer Institute (NCI), Aetna Life Insurance, Emprise, Inc., Texas State Medical Board, and the United States Government, and was found not guilty in all 5 cases, you will wish you never wrote your article").

Whether or not Mr Stephens is a lawyer, his responses to several skeptics who questioned his "client"'s science are not, in my opinion, in keeping with good science or good public policy. The world of science has no room for angry threats when a claim is put forward. The scientific method demands that skepticism be rebutted with proof, not threats. On seeing this, I am led to the opinion that these threats are being offered because the proof isn't there.

I also stand with the scientists and skeptics who find themselves facing aggressive, hyperbolic legal threats for doing what we should all do: carefully research and debate matters relating to life-or-death health issues. No doctor should respond to critics in this way. No lawyer should address potential litigants this way. In my opinion, these are serious ethical breaches, and in my opinion, "antineoplaston therapy" is almost certainly without merit. I urge anyone considering spending their money at the Burzynski Clinic to carefully read the notes attributed to the clinic's representative and ask yourself why a clinic with a sound scientific footing would respond to critics with threats, not proof.

All articles and videos posted from your little network are being forwarded to local authorities, as well as local counsel. It is your responsibility to understand when you brake[sic] the law. I am only obligated to show you in court. I am giving you final warning to shut the article down. The days of no one pursuing you is over. Quackwatch, Ratbags, and the rest of you Skeptics days are numbered...

If you had no history of lying, and if you were not apart of a fraud network I would take the time to explain your article word for word, but you already know what defamation is. I've already recorded all of your articles from previous years as well as legal notice sent by other attorneys for different matters. As I mentioned, I am not playing games with you. You have a history of being stubborn which will play right into my hands. Be smart and considerate for your family and new child, and shut the article down..Immediately. FINAL WARNING.

From Ratbags: Although many citizens do not yet realize it, comments made to chat boards, newsgroups and even mailing lists are all forms of publication. Criticisms of companies or their goods can be a basis for libel charges if the poster misrepresents facts, or fails to qualify his or her post as opinion. [ed: this is incorrect. In the USA, the Communications Decency Act immunizes people from libel claims arising from message boards and similar]...

Ratman.....SIGN THE AGREEMENT. I've been asking you for WEEKS now. If you are so sure my client is a quack, fraud, and a criminal sign. I also reduced the legal language so you would not put your rat tale between your cowardly skinny legs, and hide behind your mouse by clicking on the X to close my email request.

My agreement is posted on your website you forgot?? Instead of signing a burzynski petition sign my agreement to disclose all Burzynski information to you, which by the way is already available to the public and you know it. That is why you are not signing. Skeptics are afraid of the truth, which is why you are a skeptic in the first place. A Skeptic is someone who habitually doubts accepted beliefs. Your network even had to create your own dictionary to hide from the true meaning..hilarious. The FDA, NCI all agreed my client and his treatment works, and is non-toxic. Sign the agreement and I will show you this in writing. Hint: Just look in court orders and you will find the answer.

From Anaximperator: View the MEDICAL RECORDS of the patients on the website. I am not politically correct..so you will not receive a sugar coated response from me. You are disrespectful and ignorant. DO THE RESEARCH. How about talking to the little kids that had brain cancer. How about looking at the news that followed them from initial diagnosis to being CANCER FREE.

I demand an apology from you on this matter. As well as reposting your answer after you do your research. The people you claim are DEAD are ALIVE and that is called DEFAMATION OF CHARACTER. The patients of Dr. Burzynski are in the public eye as well as your comment about them, and you could be held liable for your “MEDICAL ADVISE”, and defamation of character. I recorded the screen with your comment as well as conducted research to, if necessary, file a legal suit if your comment is not corrected immediately. These people have families and you are causing great emotional distress to them by your uneducated comments and medical advise. Thank you. Marc Stephens

I would also like to take this opportunity to remind Mr Stephens that we have a long, honorable tradition of vigorously defending ourselves against legal threats and winning substantial costs from those who bring them.

Further, I would remind Mr Stephens of the principle that recipients of legal threats can and do ask courts to rule on those threats, and that it isn't uncommon for the court to award costs to recipients of threats in the event that the threats are found to be without merit.

Finally, I believe Mr Stephens should take note of the Streisand Effect.

Threats from The Burzynski Clinic (Thanks, Box!) ]]> http://boingboing.net/2011/11/28/representative-from-burzynski.html/feed 95 http://boingboing.net/2011/10/27/animals-in-space.html http://boingboing.net/2011/10/27/animals-in-space.html#comments Thu, 27 Oct 2011 16:04:48 +0000 Maggie Koerth-Baker http://boingboing.net/?p=126383

Once upon a time, people sent monkeys and dogs into the stratosphere as test subjects aboard rockets we weren't yet willing to put a human being on top of. We also used mice to gauge how microgravity was likely to affect humans, as seen in the old video clip above.

Today, animals still go into space, but for very different reasons. And NASA's top veterinarians have developed far more stringent guidelines governing how research animals in space can be treated. The rules are aimed at finding a good balance between the desire to be humane, the need to dissect most of the creatures that do go into space, and the constraints of working in a cramped environment.

NASA's use of animal astronauts has changed along with the culture, according to Dunlap. "We've become more compassionate with time, more aware of seeing and making sure that animals get humanely treated." The agency is unlikely ever to return to the days of flying monkeys and chimpanzees. Other than humans, mice are the highest-order animal currently being sent into space. They provide the best balance of sample size (more tissue and bone structure to study) and cage logistics: their small cages are easier to store in a cramped cabin and to provide with ample air circulation.

The mice brought back this summer on Atlantis were part of a medical study by pharmaceutical company Amgen that uses weightlessness to look at bone loss, which is worsened by the absence of gravitational stress on the skeleton. Most animal research in space is geared toward using analogous animal physiology to extrapolate the effects of microgravity on astronaut health. Amgen also hopes to use the mouse study to improve its osteoporosis drugs used on Earth.

Animals can spend months living in space before returning to Earth for analysis. Most are tucked away in experiment racks that are stowed like drawers. The crew only has to check on the animals once a day to make sure they're healthy. But if the animals become sick in orbit, there's little the crew members can do. "We have looked into trying to fly veterinary kits to treat animals," says Dunlap. "But it just becomes problematic, because if you have syringes and needles that you would use to treat an animal, then the safety folks get concerned. They don't want a crew member getting stuck or bitten."

Video Link

From the Department of Terrible Ideas: The Washington Post has a must-read story up reporting on research that promises to someday make military drones fully automated. Yes, that's right, drones that kill based on software such as facial recognition, rather than any direct human command.

I know the obvious thing to do here is make Skynet jokes. But, frankly, there are plenty of problems with this without welcoming our robotic overlords. Say, for instance, this issue, which the Post broaches with a note of wry eyebrow-raising:

The prospect of machines able to perceive, reason and act in unscripted environments presents a challenge to the current understanding of international humanitarian law.

To say the least.

But here's the really interesting thing about this story: Arms control ethicists are trying to deal with it before it exists, rather than after-the-fact.

In Berlin last year, a group of robotic engineers, philosophers and human rights activists formed the International Committee for Robot Arms Control (ICRAC) and said such technologies might tempt policymakers to think war can be less bloody.

Some experts also worry that hostile states or terrorist organizations could hack robotic systems and redirect them. Malfunctions also are a problem: In South Africa in 2007, a semiautonomous cannon fatally shot nine friendly soldiers.

The ICRAC would like to see an international treaty, such as the one banning antipersonnel mines, that would outlaw some autonomous lethal machines. Such an agreement could still allow automated antimissile systems.

“The question is whether systems are capable of discrimination,” said Peter Asaro, a founder of the ICRAC and a professor at the New School in New York who teaches a course on digital war. “The good technology is far off, but technology that doesn’t work well is already out there. The worry is that these systems are going to be pushed out too soon, and they make a lot of mistakes, and those mistakes are going to be atrocities.”

Via NPR

Also: If you're confused about the choice of photo, look to the right of the guy's head, about the middle of the image.

Image: Droning, a Creative Commons Attribution (2.0) image from oddwick's photostream

[Video Link] I went to see the documentary Project Nim last night at the advice of a friend, and would like to recommend it to all who read Boing Boing. James Marsh (Man on Wire) directed. Be prepared to cry or require hugs afterwards. Above, the trailer. It's in theaters throughout the USA now.

I was talking about it with Google+ followers last night, and one shared this review which squares with my own reaction. You can watch the first 6 minutes of the film here. The film is based on Nim Chimpsky: The Chimp Who Would Be Human, by Elizabeth Hess, who consulted on the film.

Without spoiling too much, I'd just like to share that the most upbeat takeaways for me were: Deadheads really can be awesome people. And, chimps like weed.