Category: Medicine

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

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.

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

Culture, Medicine, Past

1hikikomori

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.