Henrietta Lacks' `Immortal' Cells
Journalist Rebecca Skloot's new book investigates
how a poor black tobacco farmer had a groundbreaking
impact on modern medicine
By Sarah Zielinski
Smithsonian.com
January 22, 2010
http://www.smithsonianmag.com/science-nature/Henrietta-Lacks-Immortal-Cells.html


The Immortal Life of Henrietta Lacks
by Rebecca Skloot
Crown Publishing Group
Pub Date: February 02, 2010
368pp

[moderator: the book is available in traditional
format and also as a CD or E-book. The article link
above contains links to photos and other items
of interest]

Medical researchers use laboratory-grown human cells to
learn the intricacies of how cells work and test
theories about the causes and treatment of diseases. The
cell lines they need are "immortal"-they can grow
indefinitely, be frozen for decades, divided into
different batches and shared among scientists. In 1951,
a scientist at Johns Hopkins Hospital in Baltimore,
Maryland, created the first immortal human cell line
with a tissue sample taken from a young black woman with
cervical cancer. Those cells, called HeLa cells, quickly
became invaluable to medical research-though their donor
remained a mystery for decades. In her new book, The
Immortal Life of Henrietta Lacks, journalist Rebecca
Skloot tracks down the story of the source of the
amazing HeLa cells, Henrietta Lacks, and documents the
cell line's impact on both modern medicine and the Lacks
family.

Who was Henrietta Lacks?

She was a black tobacco farmer from southern Virginia
who got cervical cancer when she was 30. A doctor at
Johns Hopkins took a piece of her tumor without telling
her and sent it down the hall to scientists there who
had been trying to grow tissues in culture for decades
without success. No one knows why, but her cells never
died.

Why are her cells so important?

Henrietta's cells were the first immortal human cells
ever grown in culture. They were essential to developing
the polio vaccine. They went up in the first space
missions to see what would happen to cells in zero
gravity. Many scientific landmarks since then have used
her cells, including cloning, gene mapping and in vitro
fertilization.

There has been a lot of confusion over the years about
the source of HeLa cells. Why?

When the cells were taken, they were given the code name
HeLa, for the first two letters in Henrietta and Lacks.
Today, anonymizing samples is a very important part of
doing research on cells. But that wasn't something
doctors worried about much in the 1950s, so they weren't
terribly careful about her identity. When some members
of the press got close to finding Henrietta's family,
the researcher who'd grown the cells made up a
pseudonym-Helen Lane-to throw the media off track. Other
pseudonyms, like Helen Larsen, eventually showed up,
too. Her real name didn't really leak out into the world
until the 1970s.

How did you first get interested in this story?

I first learned about Henrietta in 1988. I was 16 and a
student in a community college biology class. Everybody
learns about these cells in basic biology, but what was
unique about my situation was that my teacher actually
knew Henrietta's real name and that she was black. But
that's all he knew. The moment I heard about her, I
became obsessed: Did she have any kids? What do they
think about part of their mother being alive all these
years after she died? Years later, when I started being
interested in writing, one of the first stories I
imagined myself writing was hers. But it wasn't until I
went to grad school that I thought about trying to track
down her family.

How did you win the trust of Henrietta's family?

Part of it was that I just wouldn't go away and was
determined to tell the story. It took almost a year even
to convince Henrietta's daughter, Deborah, to talk to
me. I knew she was desperate to learn about her mother.
So when I started doing my own research, I'd tell her
everything I found. I went down to Clover, Virginia,
where Henrietta was raised, and tracked down her
cousins, then called Deborah and left these stories
about Henrietta on her voice mail. Because part of what
I was trying to convey to her was I wasn't hiding
anything, that we could learn about her mother together.
After a year, finally she said, fine, let's do this
thing.

When did her family find out about Henrietta's cells?

Twenty-five years after Henrietta died, a scientist
discovered that many cell cultures thought to be from
other tissue types, including breast and prostate cells,
were in fact HeLa cells. It turned out that HeLa cells
could float on dust particles in the air and travel on
unwashed hands and contaminate other cultures. It became
an enormous controversy. In the midst of that, one group
of scientists tracked down Henrietta's relatives to take
some samples with hopes that they could use the family's
DNA to make a map of Henrietta's genes so they could
tell which cell cultures were HeLa and which weren't, to
begin straightening out the contamination problem.

So a postdoc called Henrietta's husband one day. But he
had a third-grade education and didn't even know what a
cell was. The way he understood the phone call was:
"We've got your wife. She's alive in a laboratory. We've
been doing research on her for the last 25 years. And
now we have to test your kids to see if they have
cancer." Which wasn't what the researcher said at all.
The scientists didn't know that the family didn't
understand. From that point on, though, the family got
sucked into this world of research they didn't
understand, and the cells, in a sense, took over their
lives.

How did they do that?

This was most true for Henrietta's daughter. Deborah
never knew her mother; she was an infant when Henrietta
died. She had always wanted to know who her mother was
but no one ever talked about Henrietta. So when Deborah
found out that this part of her mother was still alive
she became desperate to understand what that meant: Did
it hurt her mother when scientists injected her cells
with viruses and toxins? Had scientists cloned her
mother? And could those cells help scientists tell her
about her mother, like what her favorite color was and
if she liked to dance.

Deborah's brothers, though, didn't think much about the
cells until they found out there was money involved.
HeLa cells were the first human biological materials
ever bought and sold, which helped launch a multi-
billion-dollar industry. When Deborah's brothers found
out that people were selling vials of their mother's
cells, and that the family didn't get any of the
resulting money, they got very angry. Henrietta's family
has lived in poverty most of their lives, and many of
them can't afford health insurance. One of her sons was
homeless and living on the streets of Baltimore. So the
family launched a campaign to get some of what they felt
they were owed financially. It consumed their lives in
that way.

What are the lessons from this book?

For scientists, one of the lessons is that there are
human beings behind every biological sample used in the
laboratory. So much of science today revolves around
using human biological tissue of some kind. For
scientists, cells are often just like tubes or fruit
flies-they're just inanimate tools that are always there
in the lab. The people behind those samples often have
their own thoughts and feelings about what should happen
to their tissues, but they're usually left out of the
equation.

And for the rest of us?

The story of HeLa cells and what happened with Henrietta
has often been held up as an example of a racist white
scientist doing something malicious to a black woman.
But that's not accurate. The real story is much more
subtle and complicated. What is very true about science
is that there are human beings behind it and sometimes
even with the best of intentions things go wrong.

One of the things I don't want people to take from the
story is the idea that tissue culture is bad. So much of
medicine today depends on tissue culture. HIV tests,
many basic drugs, all of our vaccines-we would have none
of that if it wasn't for scientists collecting cells
from people and growing them. And the need for these
cells is going to get greater, not less. Instead of
saying we don't want that to happen, we just need to
look at how it can happen in a way that everyone is OK
with.