FOR a few strange months in 1984, thousands of men and boys in Hainan, China, became convinced that their penises were vanishing. The episodes often came at night as a chill entered a room, perhaps the result of a malevolent spirit. When a villager awoke screaming, terrified that his penis was shrinking into his body, friends would rush to his rescue. They would grab his penis, beat him with sandals, and squeeze the middle finger of his left hand, in the hope that the penis-thieving spirit would escape.

It is the mystery of conditions like koro, the overpowering belief that one’s genitals are disappearing, that inspired Frank Bures’s book, The Geography of Madness. Why do some mental illnesses appear only in certain cultures and historical periods?

Seen from afar, these illnesses often seem inexplicable. Why, in late 19th-century France, did young men lapse into fugue states and wander across the country? Why do so many Japanese people suffer from , the fear that their appearance or behaviour will embarrass other people? If these illnesses baffle us, it is usually because we are unfamiliar with the background conditions that give the illnesses their meaning. And the deeper one immerses oneself in the culture, as Bures tries to do, the more understandable the illnesses become.

The premise for The Geography of Madness is so irresistible you are left wondering why you never thought of it yourself. It is a travel book with a quest. Rather than setting out in search of rare Tuscan wines, the roots of Texas swing, or the ancient songs of aboriginal Australians, Bures searches for clues to exotic mental disorders.

His efforts to understand koro take him not only to the Chinese island of Hainan but to dusty villages in Nigeria and modern clinics in Singapore, where a 1967 epidemic was fuelled by rumours that koro was caused by eating tainted pork. Bures does not pretend to be a cultural anthropologist. But he is a brisk, perceptive, congenial travelling companion, thinking seriously about the mysteries of culture and illness.

“Why do some mental illnesses appear only in certain cultures and historical periods?”

Culture shapes the way the world looks, Bures writes, but more than that: culture shapes how the world feels. After a long period abroad, Bures would often come home with the uncanny sensation of finding his own culture simultaneously familiar and foreign. Returning from Italy or Tanzania to his home in Minneapolis, he writes: “I’d arrive and feel like an anthropologist examining a race of people who ran in circles, who thought bulging muscles are beautiful, and who saw convenience as a kind of birthright.”

This is no idle relativism: at roughly the same time that villagers in Hainan were becoming convinced that their penises had been stolen, for instance, many Americans believed that they or their children had been sexually abused by Satanists. Some patients recalled episodes of necrophilia, forced abortions and cannibalism, often directed by their parents and a secret network of cultists. Many suspected of this abuse were convicted and sent to prison. What exactly does this strange episode tell us about America in the 1980s?

While conditions like koro are undeniably strange, even to most members of the society in which they occur, they are also avenues to understanding. Stories bind a people together, Bures explains, for they do more than reveal our fears and anxieties and common-sense beliefs: they also reveal the architecture of our selves. Stories “hold the world together”, Bures writes. “They’re the raft on which we steer our lives down the river. If it falls apart, if we abandon it, if it’s destroyed on the rocks, all we can do is swim.”

This article appeared in print under the headline “People are strange
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“One survivor confessed to being everything from a hermaphrodite to the King of Cambodia’s son”

This article appeared in print under the headline “Secrets and lies”

“Would you be willing to exchange your clothing for plumage?” (Image: Erik Madigan Heck/Trunk Archive)

Fancy living forever, or uploading your mind to the net? The Proactionary Imperative embraces transhumanist dreams, but reminds why we need medical ethics

IN THE early 1960s prank comedy duo James Coyle and Mal Sharpe wandered the streets of San Francisco with a tape recorder making outrageous proposals to strangers. They had a special fondness for bizarre medical experiments. “Doctors have discovered that human beings, like birds, have the capacity to grow feathers,” they would say. “Would you be willing to exchange your clothing for plumage like a pheasant?” Or, “Would you be opposed to the idea of having a portion of your head surgically modified and used as a storage place for sugar?”

There is more than a little of Coyle and Sharpe in the contemporary movement known as transhumanism, which advocates a radical research agenda to transform the human condition. If you’ve ever fantasised about uploading your mind to the internet, or gestating your genetically modified children in an artificial womb, or living forever in a community of immortal, hyper-orgasmic superbeings, you’ll find friends among the members of and other such transhumanist organisations.

In The Proactionary Imperative, sociologists Steve Fuller and Veronika Lipinska aim to “provide a comprehensive intellectual justification for the emerging progressive movement of transhumanism” – a cultural and philosophical movement with its own , and even, for a time, its . Specifically, the authors are interested in what they call the “indefinite promotion” of “our seemingly endless capacity for self-transcendence, our ‘god-like character’, if you will”.

The of their book apparently comes from a 2004 declaration drafted by transhumanist philosopher and cryonics executive Max More. The “proactionary imperative” was developed as a foil to the better-known “precautionary principle”, which advises a cautious approach to research as a way of minimising risk. By contrast, the proactionary imperative is about “embracing risk as constitutive of what it means to be human”.

Proactionaries argue that, at the very least, willing volunteers should be allowed to participate in cutting-edge scientific research. And, say Fuller and Lipinska, “proactionaries might well seek long-term benefits for survivors of a revolutionary regime that would permit many harms along the way”. The programme will require “mass surveillance and experimentation”, not to mention the understanding that many people “may turn out to have been used or sacrificed for science”. Nonetheless, they write, “we must have the courage to adopt the role of Natural Selector”.

The most novel idea proposed by Fuller and Lipinska is a conceptual hybrid of genetics and hedge-fund management they call “hedgenetics”. With this, families could invest in genes much as they might in a hedge fund, funnelling their money to research of their choice. In such a society, the authors say, we would all have a responsibility to manage our genetic constitution wisely and avoid becoming “a burden to the genetic commons of the planet”.

“The idea of ‘hedgenetics’ has families funnelling their money to gene research of their choice”

If the authors are aware how their plans might sound to vulnerable populations, to disabled people or ethnic minorities, they don’t give much evidence of it. Yet it was in response to abuses of these populations that we developed the current research regulation.

For example, the Nuremberg Code, an early set of research ethics principles, was adopted in response to medical experiments on Jews and other prisoners in Nazi concentration camps. And some years on, in 1974, came the National Research Act, which led to federal guidelines governing medical research in the US. This act was a response to outrages including the Tuskegee syphilis study of impoverished African-American men, and the Willowbrook hepatitis study, which was conducted on institutionalised disabled children.

It is not that The Proactionary Imperative is unconvincing on its own terms; the problem is the terms themselves. Of course there are intellectual and theological currents that would buttress the transhumanist agenda, just as there are currents that run in the opposite direction. But for a potential subject deciding whether to take part in transhumanist research, there are more pressing questions. What exactly are you proposing? How risky is it? How will you prevent abuses? Is there any scientific evidence for the proposal, or is it pure quackery?

This book is a call to embrace the risks of medical research. But the real issue is who exactly is expected to take those risks, and under what circumstances.

It is precisely because the powerless and disadvantaged have always made such tempting research subjects that strict controls on medical research are essential.

This article appeared in print under the headline “More, or less, than human?”

But does the placebo have the magical powers that its backers claim? No researcher would think of enroling a patient with a potentially curable cancer in a placebo-controlled trial. But patients who participate in trials of drugs for schizophrenia or severe depression often end up taking nothing more potent than a sugar pill even though proven treatments are available. Partly for this reason, many physicians and ethicists have begun to challenge the ethical justification for giving patients placebos in psychiatric research.

Some psychiatric researchers have reacted by claiming that to abandon placebos would be to sacrifice science on the altar of ethics. For the moment, at least, drug regulatory agencies back the use of placebos. The US Food and Drug Administration, for instance, sees their use as controls as an indispensable component of the testing of new drugs, particularly in psychiatry. Some psychiatric patients recover spontaneously from their illness, and many have symptoms that are difficult to observe and measure precisely. For this reason, the argument goes, only by comparing patients treated with the new drug to those receiving bogus treatment can we divine the true effect of the new drug. As for ethical worries, patients are told beforehand that they may get a placebo rather than active treatment, and that they can drop out of the study at any time.

However, this defence overlooks several crucial points. First, many psychiatric patients are incapable or only marginally capable of comprehending and consenting to take part in a research study. Secondly, even subjects who have given their informed consent are often not fully aware of the risks. Paul Appelbaum, a psychiatrist at the University of Massachusetts Medical School, and his colleagues interviewed 88 research subjects with schizophrenia or depression. The patients were informed of the risks, and yet almost half failed to recognise that “some patients who desired treatment would not receive it”. And thirdly, many psychiatric patients simply trust their doctors to recommend what is best for them. If what their psychiatrist suggests is a placebo-controlled research study, then they will enrol. Indeed, this is partly why the Declaration of Helsinki, ratified in 1989, says that all patients enroled in a research protocol, including those in a control arm, must be assured of the best available treatment. That declaration is perhaps the most influential international document on the ethics of human experimentation.

Given the declaration’s clear proscription, why do psychiatric researchers continue to use placebos? “Placebolatry,” says Benjamin Freedman, a bioethicist at McGill University: psychiatrists are engaged in placebo-worship. They credit placebos with powers that they simply do not have.

For instance, many researchers believe that placebos control for the fact that some patients will improve simply as a result of knowing that they are receiving a new treatment, even if the treatment is ineffective. Placebos do no such thing. To guard against patient suggestibility, researchers design trials so that neither doctors nor patients know which treatment the patient is receiving. This standard feature of trial design, called “blinding”, is what does the job here – not placebos. Indeed, blinding is often harder to maintain with placebos than with genuine treatment. This is because many psychiatric drugs have obvious side-effects that can tip off patients and doctors as to who is getting the genuine treatment.

Other true believers credit placebos with the power to correct the potential bias of investigators in judging how well or poorly patients do in a study. Bias can certainly creep into comparative studies – if patients are aware of the treatment they are receiving, for example, this may affect the symptoms they report.

Moreover, placebos do not help to control for the fact that some patients improve spontaneously whatever treatment is given to them. In randomised trials, patients are assigned to treatment groups by chance. This means that, on average, approximately equal numbers of “spontaneous improvers” will receive the new drug and the control drug. It is this randomisation process rather than the use of placebos that protects investigators from drawing incorrect conclusions.

Perhaps the most pervasive article of faith among believers is the notion that placebo controls provides psychiatric researchers with a benchmark. Against this they claim that they can judge the effectiveness of other treatments within a study and compare results with those from other studies. But this would be true only if there were just one sort of placebo and if all patients with mental illness responded in the same way to it. Placebos have the same therapeutic complexities that active treatments possess. They show peak effects and cumulative effects. They even have toxic effects.

The fact is that most placebo-controlled trials ask and answer the wrong question. They ask: “Is this new drug better than nothing?” But many illnesses, including acute schizophrenia and major depression, can now be treated with a proven standard therapy. The clinically relevant question then is: “How does this compare with what is now being used?” And the way to answer this is to compare a new psychiatric treatment with the best standard treatment available.

Last year clinicians and ethicists at Loma Linda University in California vetoed a study sponsored by the US-based company Janssen Pharmaceutica. It would have involved giving placebos to some patients with acute schizophrenia instead of the treatment they needed for 28 days. This experience led Loma Linda to draw up a policy on placebo studies. Among other situations, it would not allow psychiatric studies that expose patients to the risks of taking a placebo when a standard therapy exists. Others should take note and follow this example. The placebo is one article of faith we can do without.