Don't cell yourself short

THE IMMORTAL LIFE OF HENRIETTA LACKS

By Rebecca Skloot 447 pages

Available at National Book Store

 A poor black woman enters John Hopkins Hospital, Virginia, in 1951; the 40-year-old woman is diagnosed with cervical cancer, and before undergoing radium treatment, a biopsy of her cancerous cervical cells is taken and placed in a lab; the woman dies from the cancer, but her cells live on, multiplying in lab Petri dishes like wild mushrooms; despite the mutation caused by cancer, the cells seem to thrive, taking over any environment in which they’re placed.

Sounds like science fiction. But it’s a true story, one of the most amazing in modern science. The woman was Henrietta Lacks, born into a family of poor tobacco farmers. After she died of cancerous tumors, an autopsy gathered more cells. Doctors were astounded by their seemingly unstoppable growth; most cells tended to die after a few days of multiplying in lab cultures. Not these cells.

John Hopkins researcher George Gey started sending sample bottles out to labs all over the world — for free — to be used in separate fields of testing. The cells, eventually referred to as “HeLa,” helped launch the fledgling field or virology, and were eventually used to develop a polio vaccine, among other cures. HeLa cells were crucial to early research in gene mapping and cloning; they were even sent into space during the early ‘60s to study the effects of zero gravity conditions on human cells, and injected with HIV to study the virus that causes AIDS.

In short, the cells of a poor black woman have led to billions of dollars worth of medical advancements, yet the surviving Lacks family members earned not a dime from them, and continue to live low-income lives in Virginia.

The HeLa story has been told before — by Rolling Stone magazine, and the BBC — but Rebecca Skloot’s best-seller, The Immortal Life of Henrietta Lacks, gets closer to the subject than any other reporters have. So close, in fact, that Skloot becomes a key part of the story. She had to earn the trust of a very suspicious family line — including Henrietta’s widower husband, a surviving daughter and jailbird son, cousins and aunts, and an extended line of Lacks relatives — all of whom had heard about the “scientific miracle” of the HeLa cells, but didn’t really understand how Henrietta Lacks could still be “alive,” despite her having died 50 years ago.

Skloot gets closest to daughter Deborah, then in her 50s and in bad health, who has little to remember her mother by besides a bag full of hospital documents and medical records. Over the decades, she’d been approached by quack lawyers and hucksters, people convinced the Lacks family should sue John Hopkins and others for profiting off her mother’s cells — cells that had been taken without Henrietta’s permission or consent. The Immortal Life of Henrietta Lacks is a complicated legal story, though it’s not a gripping John Grisham courtroom drama: no cases have ever been filed to recover money earned from the HeLa cells.

Yet scientists in countless labs worldwide have profited from those cells, growing and storing them in special freezers, then bottling and selling the cells to other labs like expensive perfume at $75 per test tube. And there is little in current law that prevents scientists from doing this.

Yet the thing that steamed Deborah most over the years, she said, was that the press never got her mom’s name right: most news stories took it on faith that “HeLa” stood for a certain Helen Lane, another cancer patient at John Hopkins at the time; few got to know the real story of the woman who owned those cells.

It is said that the HeLa cells initially taken from Henrietta Lacks have by now grown into the trillions; laid end to end, the cells would circle the globe many times. They are still growing. And still causing problems for science. Because, as much as the cells are useful in research, their high-powered growth means they can quickly overpower and contaminate other cultures and cells.

How did this happen? Scientists are not completely sure, but they believe a previous venereal disease (contracted from Henrietta’s husband) mutated her cells, and the cervical cancer mutated them even more. Gene scientists (aided by study of HeLa cells, ironically) have concluded that the HeLa cells produce an enzyme called telomerase that prevents the cell DNA’s natural telomeres — the ends of chromosomes — from whittling down a bit and deteriorating each time chromosomes replicate. She had super-cells, in other words, that refuse to age or die.

But how could scientists use cancerous cells in research without infecting other normal, healthy cells? As Skloot explains, “Despite being cancerous, HeLa cells still shared many basic characteristics with normal cells: they produced proteins and communicated with one another like normal cells, they divided and generated energy, they expressed genes and regulated, and they were susceptible to infections, which made them an optimal for synthesizing and studying any number of things in culture, including viruses.”

The value of Skloot’s book is to bring home the fact that HeLa is not just a brand name, a medical curiosity or freak of nature: the cells came from a real person. The author gets close to people who actually attended Henrietta’s autopsy. Says one lab assistant upon seeing the chipped red nail polish on the deceased woman’s toes: “When I saw those toenails, I nearly fainted. I thought, Oh, geez, she’s a real person. I started imagining her sitting in her bathroom, painting those toenails, and it hit me for the first time, those cells we had been working with all this time and sending out all over the world, they came from a live woman.”

The book ping-pongs across time, placing us back in the ‘50s, when Henrietta’s cells were first mass-produced by the Tuskegee Institute, then forward to the ’70s and 2000s, showing the struggles and anguish of the Lacks family who have only a rudimentary grasp of science. Told that someone had purchased his mother’s cells decades after her death, son Lawrence angrily phones the hospital: “I’m calling about my mother, Henrietta Lacks — you got some of her alive in there?” It must have seemed like a bad science fiction movie, with daughter Deborah imagining her mother’s cells suffering every test and infection injected into them. “They got clones of my mother walking all around London!” she incredulously tells Skloot.

It’s true that the Lacks family lost out big-time — not only losing a mother and family member, but having to constantly hear about Henrietta’s cells living on like some zombie movie. But the Lackses are not the only ones: by law, doctors and researchers are still not required to inform patients of any possible profits that could be generated by the use of the cells that are collected during medical procedures; people get a checkup, they leave some cells behind, and that’s that. The legal argument is that “negotiating” with patients over cell use would effectively put a halt to further scientific advances — not to mention lead many patients to die during the ongoing negotiations. But with gene research in its current state, it might not be long before patients are given greater legal control over the ownership of their own bodily fluids and cells.

In the meantime, Skloot’s book raises certain questions. It’s a big best-seller, after all, so isn’t she just another person who’s managed to make a profit off the Lacks family? Well, yes and no. Skloot got very close to the Lackses — so close she makes brief reference to starting a Henrietta Lacks Foundation with sales of the book to help fund the education of the surviving Lacks children. I hope this is true. It would be nice to think that Skloot’s research resulted in more than just stimulating our curiosity over a scientific anomaly, and getting Henrietta’s name right for the record.