advancement of modern medicine owes a great deal to a sharp pelvic pain
felt by a Southern black woman in 1951. This pang, followed by a
self-examination in a bathtub and a trip to Johns Hopkins, was
ultimately diagnosed as cervical cancer. “I got a knot on my womb,” the
patient had told her doctor, who scraped cells from the tumor for
further analysis. It was an ordinary procedure.
woman’s cancerous cells, however, were far from ordinary – they were
part of the first immortal cell line, their number doubling every 24
hours and filling up countless little petri dishes. More than a
half-century later, trillions upon trillions of these microscopic
wonders – “HeLa” cells -- live in labs around the world, where they’ve
been used to research AIDS, cancer and gene mapping. They've partaken
in endless scientific quests as the first cells ever cloned and the
first to be sent up in space.
Still, the story of the
human source of world’s most famous cells – the late Henrietta Lacks, a
poor tobacco farmer and mother of five – was told only sloppily or
incompletely (even to the Lacks family) until it was picked up by
science journalist Rebecca Skloot in the late 1990’s. Skloot pieced together the puzzle of the HeLa cells and the woman from whence
they came, exploring the background and ethical implications of one of
medicine’s most momentous accidents. Now Lacks, who was never even
informed that her cells had been taken and used for research (she died
eight months after the initial trip to Hopkins), has got her life’s
story on the New York Times’s bestselling nonfiction list in the form
of Skloot’s The Immortal Life of Henrietta Lacks.
read from the book, her first published, at the Harvard Bookstore,
giving audience members a basic framework of how she Lacks’s family
members collectively came to understand the story of the HeLa cells.
I came along, still no one had told them [her family] what a cell was,”
Skloot said. “Most scientists haven’t even wondered where they [the
HeLa cells] came from.” For the children of Lacks, who are still
struggling financially and have received no compensation for the
prolonged scientific use of their late mother’s cells , the cell saga
bears a lot of weight, both personally and ethically. Skloot explained
that for Deborah, Lacks’s daughter, it was initially a spiritual
question of whether or not her mother’s soul still lived in the cells.
For her sons, it was a question of financial compensation -- without
health insurance to pay for their own expensive medical procedures,
they've naturally felt gypped out of some of the profit that the
medical world has earned using their mother's cells.
probably pretty easy to convincingly paint a picture of the exploitive
doctors versus the unsuspecting and impoverished patient to a room
full of Cantabrigians, but Skloot has been forceful in her recognition
of the many edges of the HeLa sword. She explained to her audience that
she doesn’t want readers to come away from the story with a soured view
of cell research, and that, in the era during which Lacks’s cells were
taken, the issue of property rights never crossed anyone’s mind; the
researchers broke no laws.
The depth and breadth of the
moral complications of the HeLa story has resulted in conflicted
response from readers, Skloot said. But she’s not trying to drag anyone
around a circular ethical debate or sway readers to one side or the
other – The Immortal Life of Henrietta Lacks is, first and foremost, a narrative.
“In a lot of ways, it’s a story about losing a parent,” Skloot said.
DOWNLOAD: Rebecca Skloot on The Immortal Life of Henrietta Lacks [MP3]
Recorded live at the Harvard Book Store on February 10, 2010; if you enjoyed this reading, check out the HBS's schedule of upcoming events. To subscribe to our podcast, paste this RSS feed into your podcatcher or feed-reader of choice, or bookmark http://thephoenix.com/podcast.