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Survivor of Mengele's twin studies recounts her experiences on Reddit

I missed this Ask Me Anything when it was live back in February, but it's definitely worth going back and reading. It features Eva Mozes Kor, who was chosen at age 10, along with her twin sister, for experiments performed by Josef Mengele at Auschwitz. Really an amazing AMA. Maggie 9

The brain of H.M. — world's most famous amnesiac — now digitized and available online

In 2009, researchers sliced apart one of the most famous brains in history, live on the Internet. Now that brain (which once belonged to an amnesiac patient who had lost the ability to form new memories) is available to scientists around the world in digitized form. Maggie 3

A nice, little horrible bit of medical history

Back in 1931, a cancer researcher working in Puerto Rico either confessed to intentionally killing research subjects in a drunken, racist rant or (his side of the story) wrote a satirical letter to a friend that got taken out of context. Maggie 1

What should human research subjects know about the data they help create?

If you donate fluid/tissue samples ... if you participate in research as a subject of said research ... then you ought to know what scientists have learned about you, argue two geneticists in an upcoming editorial in the journal Science. The catch, say critics, is that that research is population-focused, so raw data on an individual from a population-level study could be extremely misleading. Maggie 5

Medical terminology named after Nazis

Surprisingly, there are a good half-dozen medical eponyms that come from Nazi doctors who performed experiments on unwilling human subjects or used bodies of executed prisoners in their work — often in the course of discovering the very things that now bear their names. Clara cells, for instance, are a type of cell that lines small airways in your lungs. They're named for Max Clara, who discovered them by dissecting executed political prisoners. Maggie 11

Neurosurgeons at UC Davis censured after trying out probiotic treatments on brain cancer patients

The Sacramento Bee is reporting on a complicated story about last-ditch treatments and the ethics of human experimentation.

Glioblastomas are incredibly deadly brain cancers that usually kill the people diagnosed with them within 15 months. Two neurosurgeons at UC Davis ran across anecdotal evidence suggesting that glioblastoma patients who accidentally picked up infections after surgery sometimes lived much longer — one of the surgeons claims that a patient he knew of survived another 20 years.

Read the rest

What happens when a drug works — but only for one person?

Really, really intriguing piece at Nature News by Heidi Ledford. It's all about a class of patients called "exceptional responders" — aka, the people who got a benefit (sometimes a big one) from a medication or treatment that otherwise failed the clinical trial process. When we do clinical trials, we're looking at group averages. We want to know whether a drug performed better than placebo when administered to lots of people. Sometimes, though, drugs that can't do that do seem to have a positive effect for a few lucky individuals. Now, scientists are trying to figure out why that is. What makes those people special? And how should this change the way we do research? Maggie

Honoring death by donating your body to science

i09's Annalee Newitz is donating her body to science when she dies. In a moving and fascinating article, she tells the story of her mother's death, how it led her to make this choice for herself, and what happens to bodies once they find their way into the hands of medical schools and scientists. Maggie

Shades of Tuskegee in Indian cancer studies

How do we know whether screening for something like cervical cancer is effective at saving women's lives? Two ongoing studies conducted in India (one funded by the National Cancer Institute and the other by The Gates Foundation) are aimed at answering that question — but their methods are under fire by critics.

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

No cloned Neanderthal baby for Harvard (at least not yet)

For the record, a Harvard scientist is NOT looking for an "adventurous woman" to give birth to a cloned Neanderthal. Ladies, you can stop filling out those application forms. Apparently, geneticist George Church and the German magazine Der Spiegel had a bit of a translation problem. Maggie