Photo: "Clematis 2013" Copyright © 2013 by Katinka Matson. View larger size.

Each year, literary über-agent and big idea wrangler John Brockman of Edge.org poses a new question to an assortment of scientists, writers, and creative minds, and publishes a selection of the responding essays. This year's question, which came from George Dyson, is "What *Should* We Be Worried About?"

We worry because we are built to anticipate the future. Nothing can stop us from worrying, but science can teach us how to worry better, and when to stop worrying.

Following is the full text of my contribution, "Science Has Not Brought Us Closer To Understanding Cancer."

"Cancer cells," a medical illustration by BioMedical, via Shutterstock.

We should be worried that science has not yet brought us closer to understanding cancer.

In December, 1971, President Nixon signed the National Cancer Act, launching America's "War on Cancer." Forty-odd years later, like the costly wars on drugs and terror, the war on cancer has not been won.

According to the National Cancer Institute, about 227,000 women were diagnosed with breast cancer in the US in 2012. And rates are rising. More women in America have died of breast cancer in the last two decades than the total number of Americans killed in World War I, World War II, the Korean War and the Vietnam War, combined.

But military metaphors are not appropriate to describe the experience of having, treating, or trying to cure the disease. Science isn't war. What will lead us to progress with cancer aren't better metaphors, but better advances in science.

Why, 40 years after this war was declared, has science not led us to a cure? Or to a clearer understanding of causes, prevention? Or to simply more effective and less horrific forms of treatment?

Even so, now is the best time ever to be diagnosed with cancer. Consider the progress made in breast cancer. A generation ago, women diagnosed with breast cancer would have had a prognosis that entailed a much greater likelihood of an earlier death, of more disfigurement, and a much lower quality of life during and after treatment.

Treatment-related side effects such as "chemobrain" are only just now being recognized as a scientifically valid phenomenon. A generation ago, breast cancer patients were told the cognitive impairment they experienced during and after chemotherapy was "all in their heads," if you will.

Sure, there has been progress. But how much, really? The best that evidence-based medicine can offer for women in 2013 is still poison, cut, burn, then poison some more. A typical regimen for hormone-receptive breast cancer might be chemotherapy, mastectomy and reconstruction, radiation, at least 5 years of a daily anti-estrogen drug, and a few more little bonus surgeries for good measure.

There are still no guarantees in cancer treatment. The only certainties we may receive from our doctors are the kind no one wants. After hearing "we don't really know" from surgeons and oncologists countless times as they weigh treatment options, cancer patients eventually get the point. They really don't know.

We're still using the same brutal chemo drugs, the same barbaric surgeries, the same radiation blasts as our mothers and grandmothers endured decades ago—with no substantially greater ability to predict who will benefit, and no cure in sight. The cancer authorities can't even agree on screening and diagnostic recommendations: should women get annual mammograms starting at 40? 50? Or no mammograms at all? You've come a long way, baby.

Maybe to get at the bottom of our worries, we should just "follow the money." Because the profit to be made in cancer is in producing cancer treatment drugs, machines, surgery techniques; not in finding a cure, or new ways to look at causation. There is likely no profit in figuring out the links to environmental causes; how what we eat or breathe as a child may cause our cells to mutate, how exposure to radiation or man-made chemicals may affect our risk factors.

What can make you even more cynical is looking at how much money there is to be made in poisoning us. Do the dominant corporations in fast food, chemicals, agri-business, want us to explore how their products impact cancer rates? Isn't it cheaper for them to simply pinkwash "for the cause" every October?

And for all the nauseating pink-ribbon feel-good charity hype (an industry in and of itself!), few breast cancer charities are focused on determining causation, or funneling a substantial portion of donations to actual research and science innovation.

Genome-focused research holds great promise, but funding for this science at our government labs, NIH and NCI, is harder than ever for scientists to secure. Why hasn't the Cancer Genome Atlas yielded more advances that can be translated now into more effective therapies?

Has the profit motive that drives our free-market society skewed our science? If we were to reboot the "War on Cancer" today, with all we now know, how and where would we begin?

The research and science that will cure cancer will not necessarily be done by big-name cancer hospitals or by big pharma. It requires a new way of thinking about illness, health, and science itself. We owe this to the millions or people who are living with cancer—or more to the point, trying very hard not to die from it. I know, I am one of them.

—Xeni Jardin, January, 2013, for Edge.org.]]> http://boingboing.net/2013/01/15/the-2013-edge-question-what.html/feed 42 http://boingboing.net/2012/12/19/a-suicide-draws-attention.html http://boingboing.net/2012/12/19/a-suicide-draws-attention.html#comments Wed, 19 Dec 2012 13:47:08 +0000 Maggie Koerth-Baker http://boingboing.net/?p=201328

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

At PBS NewsHour, Jenny Marder has a truly epic report on so-called "bath salts," a term commonly used to refer to a variable cocktail of drugs linked to a number of violent episodes throughout the US. Her investigative feauture is the most extensive and authoritative I've seen on the topic, a long read full of the stuff that makes great reporting great: nitty-gritty chemistry mysteries, personal stories about the people who use the drug, and big-picture questions about why the stuff is so widely available, and why it seems to be so destructive. Don't miss the slide shows and video that accompany the beautifully laid-out feature. There's even an instructional animated gif!

Users are often hyper-agitated, hot and sweating, she said. Their heart rate is dangerously high, their blood pressure is up, and seizures are common. Often even high doses of common sedatives don't help them. Doctors instead must turn to antipsychotics or other powerful medications.

Early on, doctors began noticing something else that was strange. Compared with other drugs, bath salts didn't follow a normal dose-response pattern. With cocaine or methamphetamine, the drug entered the bloodstream, and, within hours, began to wear off. Not so for bath salts. “Some patients were in the hospital for 5 days, 10 days, 14 days,” Ryan said. “In some cases, they were under heavy sedation. As you try to taper off the sedation, the paranoia came back and the delusions."

As Ryan was scrambling to grasp the scope of the problem in Louisiana, scientists 1,000 miles away were beginning to tease out the drug's chemistry. What was it about this substance, they wondered, that could make a man cut his own throat or a mother leave her 2-year-old in the middle of a highway?

Read: "Bath Salts: The Drug That Never Lets Go" (newshour.org)

(Disclosure: I've worked with Jenny before, on PBS Newshour stories with science correspondent Miles O'Brien).]]> http://boingboing.net/2012/09/21/the-science-and-tragedy-of-b.html/feed 68 http://boingboing.net/2012/08/09/do-things-that-have-never-be.html http://boingboing.net/2012/08/09/do-things-that-have-never-be.html#comments Thu, 09 Aug 2012 17:48:21 +0000 Xeni Jardin http://boingboing.net/?p=175720 An Unexpected Ass Kicking," intellectually speaking, which he received in a Portland coffee shop from Russell Kirsch—the 80-year-old man who invented America's first internally programmable computer. Kirsch isn't a big fan of Apple products.]]> http://boingboing.net/2012/08/09/do-things-that-have-never-be.html/feed 20 http://boingboing.net/2012/07/16/everyone-only-wants-temps.html http://boingboing.net/2012/07/16/everyone-only-wants-temps.html#comments Mon, 16 Jul 2012 15:34:31 +0000 Xeni Jardin http://boingboing.net/?p=171354 Mother Jones, Gabriel Thompson goes gonzo with a stint doing "on demand" grunt work for one of America's hottest growth industries: temping.

I grab a chair from a stack in the corner and take a seat, studying a sign that implores me to be "true" and "passionate" and "creative." In reality, passion and creativity have nothing to do with it. Labor Ready provides warm bodies for grunt work that pays minimum wage or thereabouts. "Here's a sledgehammer, there's the wall," is how Stacey Burke, the company's vice-president of communications, characterized the work to Businessweek back in 2006.

Read the whole piece here: "Everyone Only Wants Temps" (Mother Jones).

Web startups are made out of two things: people and code. The people make the code, and the code makes the people rich. Code is like a poem; it has to follow certain structural requirements, and yet out of that structure can come art. But code is art that does something. It is the assembly of something brand new from nothing but an idea.

Read: How Yahoo Killed Flickr and Lost the Internet. (Gizmodo)

Nobody has seen or heard from Margie Profet since at least 2004 or 2005, writes Mike Martin at Psychology Today. His piece is an interesting biography of a woman who was incredibly intelligent, and who also likely suffered from some serious symptoms of mental illness for years. Only her closest family and friends seem to have been aware of what was going on in Profet's personal world. Over the course of the late 90s and early 2000s, Profet shut them, and everyone else, out of her life so successfully that nobody is really sure when she vanished.

This is one of those long reads that will take you a little while to get through, but it's worth checking out. Even aside from the mysterious disappearance, I found Martin's explanation of Margie Profet's contribution to science really fascinating. Profet presented several, interconnected theories suggesting that allergies, morning sickness, and menstruation all evolved as means of blocking or removing poisonous, cancer-causing, and disease-causing substances from the body.

For Profet, all three biological processes were part of the same system. But some parts of her theory have held up better than others. The idea that allergies might be a biological defense? Other scientists have found some evidence to support that—although much of that evidence seems to be in the form of potentially interesting correlations between the presence of allergies and reduced risk of certain cancers. It's still not been proven. Meanwhile, Profet's insistence that menstruation exists to rid the body of toxic substances has been pretty uniformly ripped apart.

Three years after her QRB paper on menstruation, Profet’s most ardent critic surfaced with a rebuttal in the same journal. Point by point, University of Michigan anthropology professor Beverly Strassmann deconstructed Profet’s argument. Logic and prior research didn’t support her claim that menstrual bleeding reduces infections, Strassmann wrote. It happens too rarely in the life of a woman to have such significance. Profet also predicted that promiscuity would correlate with menstruation frequency. But no such correlation exists, Strassmann retorted: The comparatively chaste bleed just as much as the sexually profligate.

What's interesting to me is that all of Profet's work—whether some of it turns out to be right or not—seems to have been born, at least partially, from the same symptoms that eventually, probably, led to her disappearance.

Evolutionary psychologist David Buss once noted that Profet “seemed to possess a unique view of the world that included a paranoia consumed with invading pathogens and parasites,” recalls his former student Barry Kuhle, now a University of Scranton (Pa.) psychology professor. This paranoia may have fueled her genius. It may also explain her disappearance.

Read the rest at Psychology Today

Frank Bures is a friend of mine here in the Twin Cities. He's also one of the best travel writers I've ever had the pleasure of meeting. You might remember his work from a post a couple of years ago, about Bigfoot hunting in northern Minnesota.

He has a more-serious piece out in the recent issue of The Washington Post magazine. Twenty years ago, Frank spent a little over a year working as an English teacher in Tanzania, just outside the town of Arusha. Recently, he went back, both to re-connect with the people he'd met so many years ago, and to make a trip he'd always regretted not taking the first time around—climb Mount Meru.

Unlike most people who travel to Tanzania, I had no desire to climb Kilimanjaro, which seemed like an overrun fundraising cliche. But Meru was different. Meru was difficult, unforgiving, temperamental, with an air of hard beauty and mystery.

Our bus rolled forward, and I stared out the window at the mountain’s outline. After all these years, it looked the same, though much else had changed. Seeing it again reminded me of my last glimpse of it through a bus window, and of the ache of departure, of the bitterness of leaving all my friends and students and neighbors, but also of the sweetness of having known them.

This was a reunion of several kinds. After too long I was back in this place — to reconnect with people, to find out how things had changed.

But also, I was finally here to meet the mountain.

This is a long read, but worthwhile. At it's heart is a story you don't often hear about Tanzania, and other African countries. Turns out, some of the biggest changes that have happened over the last 20 years have been economic. In a good way. When Frank returns to Arusha, he finds that many of his former students have pulled themselves into the middle class. They're creating comfortable, happy lives for themselves and making their own country better.

In the photo above (taken by Washington Post photographer Sarah Elliot), you can see Simon Moses, and his wife Nai, in front of the home they built themselves. Moses was one of Frank's students. Twenty years ago, he asked Frank to take him to America, because he was afraid of having no future in Arusha. Today, Moses owns a travel company. His wife is an accountant.

Read the rest of Frank's story in The Washington Post.

Usually, when that caveat comes up, the person giving it is talking about fundamental differences between mouse biology and human biology. For instance, a mouse might only need one copy of a genetic factor to grow normally. Meanwhile, a human needs to have both copies or risk altered sexual development.

But there are other problems with mice, problems that have more to do with how we select, breed, and raise mouse models. In a fascinating three-part series on Slate.com, Daniel Engber looks at how we undermine the usefulness of our own lab mice, and the risks we take when we do so.

If you put a rat on a limited feeding schedule—depriving it of food every other day—and then blocked off one of its cerebral arteries to induce a stroke, its brain damage would be greatly reduced. The same held for mice that had been engineered to develop something like Parkinson's disease: Take away their food, and their brains stayed healthier.

But Mattson wasn't so quick to prescribe his stern feeding schedule to the crowd in Atlanta. He had faith in his research on diet and the brain but was beginning to realize that it suffered from a major complication. It might well be the case that a mouse can be starved into good health—that a deprived and skinny brain is more robust than one that's well-fed. But there was another way to look at the data. Maybe it's not that limiting a mouse's food intake makes it healthy, he thought; it could be that not limiting a mouse's food makes it sick. Mattson's control animals—the rodents that were supposed to yield a normal response to stroke and Parkinson's—might have been overweight, and that would mean his baseline data were skewed.

Part 1: The unhealthy lives of industrialized lab mice
Part 2: The trouble with focusing so much research on one single mouse species
Part 3: Why the naked mole rat (and the Burmese python) can help

Crowds at the OWS Day of Action, November 17, 2011, in New York City. © C.S. Muncy/csmuncyphotography.com

You'll want to read this essay on OWS as API by Atlantic senior editor Alexis Madrigal—and then you'll want to share it with friends who don't totally get OWS yet:

The most fascinating thing about Occupy Wall Street is the way that the protests have spread from Zuccotti Park to real and virtual spaces across the globe. Metastatic, the protests have an organizational coherence that's surprising for a movement with few actual leaders and almost no official institutions.

Much of that can be traced to how Occupy Wall Street has functioned in catalyzing other protests. Local organizers can choose from the menu of options modeled in Zuccotti, and adapt them for local use. Occupy Wall Street was designed to be mined and recombined, not simply copied.

This idea crystallized for me yesterday when Jonathan Glick, a long-time digital journalist, tweeted, "I think #OWS was working better as an API than a destination site anyway." If you get the idea, go ahead and skip ahead to the documentation below. If you don't get, let me explain why it might be the most useful way of thinking about #Occupy.

Read the rest. Alexis is on Twitter and G+.]]> http://boingboing.net/2011/11/18/the-occupy-wall-street-api.html/feed 6