Mysterious medical research consortium: we should own volunteers' clinical trial data for 5 years

The "International Consortium of Investigators for Fairness in Trial Data Sharing" -- a group that appears to have just been formed, backed by 282 researcher in 33 countries -- has objected to a plan to limit exclusivity over clinical trial data derived from medical volunteers, insisting instead that the fair thing to do is to lock up this uncopyrightable, factual data for up to five years. Read the rest

Your medical data: misappropriated by health-tech companies, off-limits to you

Backchannel's package on medical data and the health-tech industry profiles three people who were able to shake loose their own data and make real improvements in their lives with it: Marie Moe, who discovered that the reason she was having terrifying cardiac episodes was out-of-date firmware on her pacemaker; Steven Keating, who created a website with exquisitely detailed data on his brain tumor, including a gene-sequence that had to be run a second time because the first scan wasn't approved for "commercial" use, which included publishing it on his own site; and Annie Kuehl, whose advocacy eventually revealed the fact that doctors had suspected all along that her sick baby had a rare genetic disorder, which she only learned about after years of agonizing victim-blaming and terrifying seizures. Read the rest

Study confirms a physical correlate to PTSD: "brown dust" in the brain

Since WWI, doctors have speculated that PTSD's underlying cause was some sort of physical damage caused by blast-waves from bombs, which literally shook loose something important in the brains of sufferers. Read the rest

Siberian heat wave unleashes deadly 'zombie anthrax' outbreak

At least 90 people have been hospitalized from an anthrax outbreak in Russia, including 50 children. Eight are confirmed as infected with anthrax. Doctors believe at least 6 patients have the more virulent intestinal form of the disease, which killed one boy, age 12. Authorities say it's the first fatal anthrax outbreak in Russia in more than 75 years.

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Zika hits the US military: 33 service members now have virus, says Pentagon

Pentagon officials told reporters today that at least 33 active-duty American service members, one of whom is a pregnant woman, have Zika.

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Flossing is bullshit

The Associated Press filed Freedom of Information requests with the US government to find the evidence behind the Surgeon General's admonition to floss regularly for dental health and found that there was no good evidentiary basis for flossing. Read the rest

New logo for the Rio Olympics

On Reddit, Nephelus notes the shambolic and rather menacing state of the forthcoming Olympics in Rio. In honor of Zika, the disease that will spread like crazy once the tourists show up, they created this striking new logo. Read the rest

The history of the home pregnancy test is a microcosm of misogyny, chauvinism, and erasure

When Pagan Kennedy wrote her 2012 New York Times Magazine history of home pregnancy testing, it didn't mention Margaret Crane, the product designer who created, designed and championed the test and all it stood for: the right of "a woman to peer into her own body and to make her own decisions about it, without anyone else — husband, boyfriend, boss, doctor — getting in the way." Read the rest

This map shows where the tallest people live

New research on trends in adult human height over the last century confirm that, no surprise, humans are getting taller overall due to better nutrition and disease control. However according to the health science group Non-Communicable Diseases Risk Factor Collaboration (NCD-RisC), the gain in adult height varies dramatically by country. From their paper, published in the journal eLife:

The largest gain in adult height over the past century has occurred in South Korean women and Iranian men, who became 20.2 cm (95% credible interval 17.5–22.7) and 16.5 cm (13.3–19.7) taller, respectively. In contrast, there was little change in adult height in some sub-Saharan African countries and in South Asia over the century of analysis. The tallest people over these 100 years are men born in the Netherlands in the last quarter of 20th century, whose average heights surpassed 182.5 cm, and the shortest were women born in Guatemala in 1896 (140.3 cm; 135.8–144.8).

The scientists' hope is that understanding these changes and distributions could be used "to improve nutrition and health across the world."

"It would also be valuable to understand how much becoming taller has been responsible for improved health and longevity throughout the world," they write."

"A century of trends in adult human height" (eLife)

"How humans have changed in height in the last 100 years" (CNN) Read the rest

Our public health data is being ingested into Silicon Valley's gaping, proprietary maw

In a lead editorial in the current Nature, John Wilbanks (formerly head of Science Commons, now "Chief Commons Officer" for Sage Bionetworks) and Eric Topol (professor of genomics at the Scripps Institute) decry the mass privatization of health data by tech startups, who're using a combination of side-deals with health authorities/insurers and technological lockups to amass huge databases of vital health information that is not copyrighted or copyrightable, but is nevertheless walled off from open research, investigation and replication. Read the rest

Advances in transparent, brain-revealing skull-windows

Researchers at UC Riverside and Centro de Investigación Científica y de Educación Superior de Ensenada have published a paper describing their ongoing success in setting a "transparent nanocrystalline yttria-stabilized-zirconia" into patients' skulls, which reveal the patients' brains so that the patients' brains can be zapped with therapeutic lasers. Read the rest

Gonorrhea may soon be unbeatable

Approximately 350,000 people in the US are diagnosed with gonorrhea each year. According to the CDC, it may soon be untreatable. Currently, the sexually-transmitted disease, not-so-fondly known as The Clap or The Drip, is treated with two antibiotics, azithromycin and ceftriaxone. Data is currently showing a rise in gonorrhea samples that are resistant to those drugs.

Companies are developing new antibiotics but could be "years away," says CDC medical epidemiologist Robert D. Kirkcaldy.

"We think … it’s a matter of when and not if with resistance,” he says. “This bug is so smart and can mutate so rapidly.”

(Scientific American) Read the rest

Help Doctors Without Borders fill in the geodata blanks for vulnerable communities

Pete from Doctors Without Borders writes, "Medecins Sans Frontieres/Doctors Without Borders have today launched MapSwipe, an app that enables anyone with a smartphone to map the most vulnerable communities in the world. Geo-data is vital for aid agencies responding to emergencies such as disease outbreaks and natural disasters and MapSwipe now gives everybody the ability to contribute directly to these responses. So, instead of Angry Birds or Candy Crush, you can now do something meaningful on your commute! (MSF has developed MapSwipe as part of the Missing Maps project, where thousands of volunteers assist NGOs by mapping their areas of operations on OpenStreetMap.)" Read the rest

Two men just learned via Grindr that they are HIV-positive

A recent study has found that the gay dating app Grindr is a pretty effective way to get black and Hispanic men who like to have sex with men to try home H.I.V. self-testing kits. The home test doesn't require blood, but rather uses a swab of the gums to generate reliable results in 20 minutes. Of the 56 Los Angeles area men who participated in the study and received kits, two men learned from the kits that they were infected.

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Statement from Chelsea Manning's lawyers on her emergency hospitalization

Further to yesterday's news that US military whistleblower Chelsea Manning had been hospitalized and cut off from her lawyers and family, a statement from her legal team. Read the rest

Chelsea Manning cut off from contact with lawyers after medical emergency

U.S. military officials are preventing imprisoned whistleblower Chelsea Manning from having contact with her legal team or her friends, following unconfirmed reports that she was hospitalized after a health crisis.

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Epipens have more than quintupled in price since 2004

Epipens -- self-injection sticks carried by people with deadly allergies, which have to be replaced twice a year -- were developed by NASA at taxpayer expense, were patented by a government scientist who receives no royalties, require no marketing, and have gone from as little as $60 each to up to $606 in a few short years (during which time the company has switched to selling them exclusively in two-packs). Read the rest

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