Medicine Archive

The Tuskegee Syphilis Study: Another Look at Unethical Medicine

By Amy Thibodeau, May 31, 2010, 10:41 pm in Medicine, Past

Tuskegee is a small city in Alabama, which has played a pivotal role in the civil rights movement. It still houses Tuskegee University, which began as the Tuskegee Normal School for Colored Teachers founded in 1881 by Booker T. Washington; it is also where Rosa Parks was born. Sadly, it is also the location of the Tuskegee Syphilis Study.

According to Tuskegee University, it all began in the 1920s when a Chicago-based charity approached the government via the Public Health Service (PHS) with some ideas for improving the health of African Americans. The PHS had a special interest in addressing Syphilis as they’d recently completed a study that showed that upwards of 25% of a 2,000 person sample were afflicted with it.

Although the study may have began with good intentions, it shifted from being about helping those afflicted with the disease to becoming a study about the effects of untreated Syphilis on live patients.

the time of the project, African Americans had almost no access to medical care. For many participants, the examination by the PHS physician was the first health examination they had ever received. Along with free health examinations, food and transportation were supplied to participants. Thus, it was not difficult to recruit African American men as participants in the study. Burial stipends were used to get permission from family members to perform autopsies on study participants. (source)

You can imagine where they went with this. With a captive audience of living subjects at their disposal, the PHS made the horrifying decision that in order to study the disease in living patients they would not disclose the illness and instead would watch as patients slowly deteriorated and eventually died from it. In some cases, they even prevented subjects from receiving treatment from other sources: “During World War II, about 50 of the study subjects were ordered by their draft boards to undergo treatment for syphilis. The PHS requested that the draft boards exclude study subjects from the requirement for treatment. The draft boards agreed.” (source)

Unbelievably, this study continued until the late 1970s. When the director of the PHS department responsible for the study between 1943 and 1948 was interviewed in 1981 he admitted, “The men’s status did not warrant ethical debate. They were subjects, not patients; clinical material, not sick people.” (source)

Further reading: Henrietta Lacks and the Tragic Story of Medical Ethics, Racial Politics and Health Care Reform in America.

Image: Disease by Erik Starck

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Eccentric Torments – The Glass Delusion

By Amy Thibodeau, May 11, 2010, 2:43 am in Books, Medicine, Past

I am in the thick of reading Brian Dillon’s excellent book Tormented Hope: Nine Hypochondriac Lives. There is an interesting passage on an imagined affliction I’ve never heard of before:

In the history of such eccentric torments, none is stranger or more instructive than the so-called ‘glass delusion’. From the late Middle Ages onwards, this remarkably specific and consistent notion appears time and again in the literature on melancholia and hypochondria. The patient, as the reader will have surmised, fantacies that he or she is made of glass, either in part or in whole. (In a series of related delusions, patients may imagine that they have lost limbs, that they have been turned into animals, that they are dead, that they do no exist or, as in the case of an unforuntae baker who was afraid to go near his oven, that they are made of butter.) This has predicatable consequences: the ‘glass man’ fears for his physical safety, avoiding not only hard knocks but in some cases any touch at all from another person, as well as such delicate operations as sitting or lying down. The broad outlines of the delusion – imagining that one is made of a brittle substance – were not unknown to antiquity: classical accounts of earthenware men abound, but the spread of glass in the Early Modern period brought with it the possibility of thinking oneself made of less sturdy stuff …

The book features famous hypochondriacs including Darwin, Florence Nightengale, Charlotte Bronte and Andy Warhol, with a particular focus on the specific kind of craziness so completely epitomized by the Victorians. It’s a very interesting read.

Image: Broken Glass by Davetoaster

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How Roger Ebert Got his Voice Back

By Amy Thibodeau, March 9, 2010, 9:55 pm in Film, Medicine, Present

Recently, Esquire published an exquisite cover story on film critic Roger Ebert, who is best known for the decades he spent debating great and not-so-great films with his counterpart Gene Siskel on the popular television programme, At the Movies. Since the article came out last month, people can’t get enough of Ebert. His blog, which was already popular, has developed cult popularity, he has well over 100,000 followers on Twitter, he’s recently created a Fan Club (inspired by an old friend who also happens to be a successful web porn entrepreneur) and he was a guest on Oprah.

Although there are hundreds of hours of footage of Ebert’s voice in At the Movies, it seemed very unlikely, if not impossible, that he would ever be able to speak again, using anything other than an artificial voice that bears no resemblance to the original. Recently, a Scotland-based company called CereProc used archival recordings to recreate an artificial voice that sounds like Ebert. Although it is still in beta, it even has the potential to eventually take on emotional inflection. CereProc is “an advanced voice synthesis company… [which] creates customized text-to-speech software. Instead of producing flat computerized voices, the company says its voices include realistic, animated and emotional dimensions.” (source)

The company undertakes a great deal of research on, what they call, the emotional continuum to stimulate realistic emotional states in voice reproductions:

CereVoice uses two separate techniques to simulate emotional states. The first is to select tense or calm voice quality. This compares closely with the perception of negative and positive emotional states (however, it also has an active/passive effect to some extent). The second is to use digital signal processing (DSP) techniques to alter the speech to active or passive states. Active states involve: faster speech rate, higher volume and higher pitch, Passive states involve: slower speech rate, lower volume and lower pitch. (source)

Pretty inspiring stuff!

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Henrietta Lacks and the Tragic Story of Medical Ethics, Racial Politics and Health Care Reform in America

By Amy Thibodeau, February 3, 2010, 5:54 pm in History, Medicine, Present

immortal-life

For months, the world has watched eagerly as Obama has tried to navigate the juggernaut of health care reform in the United States. I’m from Canada and I currently live in the United Kingdom, both countries with a long and ardent history of public health care. Maybe that’s why I don’t understand how such a great number of people can be so opposed to the idea that everyone deserves to be able to see a doctor when they are unwell. As recently as today, the Senate is giving no indication of when the watered down Plan B will be passed or when millions of uninsured American citizens can expect some support from their government.

In light of all that is going on with health care reform, Rebecca Skloot‘s book The Immortal Life of Henrietta Lacks becomes all the more poignant, relevant and sad. It’s the true story of a woman who has been largely ignored by the people who write history, despite her involuntary but undeniably great contribution to science over the last century. The reasons for her omission are complex, and no doubt begins and ends with the fact that she was a “poor and largely illiterate Virginia tobacco farmer, the great-great-granddaughter of slaves. Born in 1920, she died from an aggressive cervical cancer at 31, leaving behind five children. No obituaries of Mrs. Lacks appeared in newspapers. She was buried in an unmarked grave.” (source) Her cancer was extremely aggressive and at some point, without her knowledge or consent or that of her family, cells (now called HeLa cells by scientists) were taken from her diseased cervix and have been used as the basis for medical invention for decades.

There are … “trillions more of her cells growing in laboratories now than there ever were in her body.” Laid end to end, the world’s HeLa cells would today wrap around the earth three times. Because HeLa cells reproduced with what the author calls a “mythological intensity,” they could be used in test after test. “They helped with some of the most important advances in medicine: the polio vaccine, chemotherapy, cloning, gene mapping, in vitro fertilization” … HeLa cells were used to learn how nuclear bombs affect humans, and to study herpes, leukemia, Parkinson’s disease and AIDS. They were sent up in the first space missions, to see what becomes of human cells in zero gravity. (source)

The only reason anyone knows about Henrietta Lacks’s contribution is because, decades after her death, doctors began to take blood samples from her surviving relatives to be able to better understand and study HeLa cells. Today, many of her relatives are living in Baltimore and, like Lacks herself did, they struggle to get by. Despite this, they are luckier than Lacks’s daughter who was institutionalised in what must have been a hellish facility – The Hospital for the Negro Insane – where she died at the age of 15. The story defies imagination and inspires disbelief, followed by a combination of anger and horror. According to Skloot’s research, the medical tradition has a long history of experimenting on African Americans in the name of science.

What does this have to do with health care reform?

Says one of Henrietta Lacks surviving sons, “She’s the most important person in the world, and her family is living in poverty. If our mother was so important to science, why can’t we get health insurance?”

Indeed.

The Immortal Life of Henrietta Lacks book jacket image curtosy and copyright of Rebecca Skloot.

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J.D. Salinger, Famous Shut-ins and Hikikomori in Japan

By Amy Thibodeau, January 31, 2010, 9:31 pm in Culture, Medicine, Past

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The death of writer J.D. Salinger last week renewed the public’s interest in his reclusive life-style. According to most accounts, Salinger lived a fairly conventional life until after the publication of his most well-known work The Catcher in the Rye – some claim that he actively sought fame and success until he found it and, with no explanation, retreated. He’s in the good company of other famous recluses including: Harper Lee, Lauryn Hill and Bobby Fischer.

Perhaps because the very nature of anti-social behaviour is a closing off from society, it remains something that very few people understand, including those in the medical community. In recent years, pathologically reclusive behaviour has become such a phenomenon in Japan that it has been given its own name: hikikomori. Although his figures are disputed, psychologist Tamaki Saito has estimated that “there may be one million hikikomori in Japan, representing 20% of all male adolescents in Japan, or 1% of the total Japanese population.” According to a fascinating profile of hikikomori in the New York Times, “though female hikikomori exist and may be under counted, experts estimate that about 80 percent of the hikikomori are male, some as young as 13 or 14 and some who live in their rooms for 15 years or more.”

Unlike most of the young hikikomori of Japan, Salinger did seem to reach out to people – he was married a number of times and had two children. Time and again, these relationships tended to be fraught and often ended abruptly. Salinger’s daughter Margaret published a memoir about him and wrote, “His search . . . led him increasingly to relations in two dimensions: with his fictional Glass family, or with living ‘pen pals’ he met in letters, which lasted until meeting in person when the three-dimensional, flesh-and-blood presence of them would, with the inevitability of watching a classic tragedy unfold, invariably sow the seeds of the relationship’s undoing.”

J.D. Salinger’s version of events? “You can’t ever find a place that’s nice and peaceful, because there isn’t any. You may think there is, but once you get there, when you’re not looking, somebody’ll sneak up and write “Fuck you” right under your nose.” (source)

Image from Strawberrymilkchocolate.

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