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Cold Equations and Moral Hazard: science fiction considered harmful to the future

My latest Locus column is "Cold Equations and Moral Hazard", an essay about the way that our narratives about the future can pave the way for bad people to create, and benefit from, disasters. "If being in a lifeboat gives you the power to make everyone else shut the hell up and listen (or else), then wouldn’t it be awfully convenient if our ship were to go down?"

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Pope blasts capitalism


In a new Evangelii Gadium, Pope Francis has condemned doctrinaire capitalism, "deified markets," trickle-down economics, and the finance industry. He decried the growing gap between the rich and the poor, tax evasion by the wealthy, and characterized ruthless free-market economics as a killer that was inherently sinful.

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Call for papers: Robots, Risks and Opportunities


Michael sez, "We Robot, the conference in which roboticists, lawyers, philosophers and many others meet to try to work out how robots will fit into the society of the future, will be meeting in the University of Miami School of Law in Coral Gables Florida Apri 4-5, 2014. The Call for Papers just went up, with abstracts due Nov. 4. This is the place where people go to discuss whether robot diagnosticians should be trusted even if we can't understand the reasons for their choices, what limits we should put on battlefield drones, and whether law enforcement can be mechanized. Last year's conference also featured a presentation from one of the creators of Futurama."

Call for Papers – We Robot 2014: Risks & Opportunities – April 4 & 5 in Coral Gables, FL (Thanks, Michael!)

Placebos work, so how do we ethically use them?

The head of Harvard's placebo program is trying to figure out a good answer that question. Maggie 16

When the octopus says, "ouch"

Given that people are going around doing things like cutting off octopus limbs in order to understand their distributed neuron processing system, it's worth asking some questions about how octopuses perceive pain, as well. That's more complicated than you might think. As Katherine Harmon explains, it's likely that octopuses have some kind of awareness of when they're touching something unpleasant. But just how that works, and how similar it might be to the way we vertebrates understand "pain", is a big mystery. Maggie 3

A moving account of how hospitals negotiate complicated cases of patient rights

Yesterday, a story about human experimentation spurred an interesting discussion in the comments about patient rights — can somebody who is dying make the informed decision to accept a treatment that could lead to them dying sooner? At Scientific American today, an HIV doctor has written a moving account of dealing with a very similar question, as one of his patients made the choice to refuse food, and her family and doctors were faced with the task of deciding whether or not to feed her through a stomach tube. Maggie 4

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.

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China says it will stop harvesting organs from prisoners

More than half of China's donated organs come from executed prisoners. The Chinese government now says it will begin phasing out that practice, starting in November. All new organ donors must volunteer. Of course, there's good reason to be skeptical of this announcement. As Smithsonian points out, the practice has already been illegal since 2006 with not much done to change it. Meanwhile, a harrowing 2011 investigative report by Ethan Gutmann in the Weekly Standard revealed a system that leaves plenty of room for "volunteer" loopholes. Maggie 7

Ethical questions for security experts


Alex Stamos's Defcon 21 presentation The White Hat’s Dilemma is a compelling and fascinating look at the ethical issues associated with information security work in the era of mass surveillance, cyberwar, and high-tech extortion and crime.

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Life, death, and the people we love the most

Margaret Pabst Battin is a philosopher and right-to-die activist who firmly believes that the concepts of autonomy and mercy demand that we, as a society, allow the sick, the old, and the infirm to decide, for themselves, how and when and where they will die. In 2008, her husband, Brooke Hopkins, barely survived a bicycle accident that left him paralyzed from the neck down, on a pacemaker, and frequently sick. At The New York Times Magazine, Robin Henig tells the moving, beautiful, and sad story of a couple struggling in real life with questions that had, previously, been mostly theoretical. At the heart of it is a big, messy question: What happens if you do, sometimes, really want to die ... but the people who love you aren't ready to let go just yet? Maggie 1

Why new cloned mice can help scientists treat lab animals more humanely

This week, scientists cloned a mouse from cells found in a drop of mouse blood. That's different from other cloned mice, whose creation relied on more invasive sampling from the liver, bone marrow, and lymph nodes (read: the original animal was euthanized). Cloning mice is valuable for scientific research — it's handy to have your subjects be as alike one another as possible. Now, scientists have a way to do that without having to kill the original mouse. Maggie 5

How an aborted fetus may have saved your life (and the lives of many other fetuses)

Cell culture lines are cells, taken from donor tissue, that have been divided and separated over and over and over — providing researchers with reliably identical "families" of cells that can be used to biomedical research. Some, like the now-famous HeLa line, are derived from cancerous tissue and replicate indefinitely. Others, like WI-38, will only divide a set number of times (in the case of WI-38, it's 50), but new cells can be frozen at any point and stored. When you thaw them out later, they'll pick back up dividing from the point in the 50-division cycle where they were when frozen.

WI-38 is a particularly important cell culture line. Used extensively in the development of vaccines, these are the cells that helped create the vaccine for Rubella, a disease that, just a few decades ago, used to kill and maim many fetuses whose mothers' became infected. Between 1962 and 1965, it's estimated that rubella infections caused 30,000 stillbirths and left 20,000 children with life-long disabilities.

But WI-38 is controversial. That's partly because the cells that founded the line came from the lung tissue of a fetus that was legally aborted during the fourth month of pregnancy by a woman in Sweden in 1962. At Nature News, Meredith Wadman has a fascinating long read about the moral and ethical issues surrounding WI-38. This isn't just about the abortion question. Also at issue: Did the fetus' mother consent to tissue donation? And are we okay with the fact that she and her family have never received compensation, despite the money that's been made off selling WI-38 cell cultures?

Medical Research: Cell Division by Meredith Wadman in Nature News

How markets allow people to violate their moral codes

Here's a press-release describing a paywalled paper in Science magazine, written by a pair of University of Bonn Economists. They conducted an experiment that showed how markets diffused responsibility for actions that ended up violating individual moral codes, so that people did things in market contexts that they had previously described as immoral when done individually.

"To study immoral outcomes, we studied whether people are willing to harm a third party in exchange to receiving money. Harming others in an intentional and unjustified way is typically considered unethical," says Prof. Falk. The animals involved in the study were so-called "surplus mice", raised in laboratories outside Germany. These mice are no longer needed for research purposes. Without the experiment, they would have all been killed. As a consequence of the study many hundreds of young mice that would otherwise all have died were saved. If a subject decided to save a mouse, the experimenters bought the animal. The saved mice are perfectly healthy and live under best possible lab conditions and medical care.

A subgroup of subjects decided between life and money in a non-market decision context (individual condition). This condition allows for eliciting moral standards held by individuals. The condition was compared to two market conditions in which either only one buyer and one seller (bilateral market) or a larger number of buyers and sellers (multilateral market) could trade with each other. If a market offer was accepted a trade was completed, resulting in the death of a mouse. Compared to the individual condition, a significantly higher number of subjects were willing to accept the killing of a mouse in both market conditions. This is the main result of the study. Thus markets result in an erosion of moral values. "In markets, people face several mechanisms that may lower their feelings of guilt and responsibility," explains Nora Szech. In market situations, people focus on competition and profits rather than on moral concerns. Guilt can be shared with other traders. In addition, people see that others violate moral norms as well.

"If I don't buy or sell, someone else will."

Markets Erode Moral Values (via Reddit)

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

A suicide draws attention to the ethics of psychiatric drug testing

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