The Immortal Life of Henrietta Lacks, by Rebecca Skloot (Broadway Books, 2011, 382 pages,
$16.00) Also an HBO movie (2017) starring Oprah Winfrey and Leslie Uggams.
It was sometime in the
1970s. I was a grad student in genetics. It was in our weekly Animal Science
department seminar that I first heard about Temple Grandin a couple of states
away - and that I also heard of HeLa* cells - we were told they were named after
Helen Latham (at least that is what I remember).
Wrong!
The Book
The Immortal Life of Henrietta Lacks was selected as the 2011-12 Howard Book
Connection book so you know it is worth the read: so, too, is any book with
a readers’ guide (questions for a book club discussion). You can also listen to
a radio
program, Famous Tumors.
The Howard County, Maryland,
public library has 66 copies: if you are connected to the community college, Henrietta is also available there.
Look closely and you will
see (Henrietta’s?) cells on the cover, along with that iconic photo of Henrietta
as a young woman. Look even closer and you will see the He and La in her name
are in boldface: her cell line is the HeLa cell line, so named because the
convention of the day was to use the first two letters of the person’s first
and last names.
Who was Henrietta Lacks?
Henrietta lived in Clover, Virginia,
and married a cousin, had five children (two of whom were too young to remember
her) and moved to Baltimore near Johns Hopkins hospital (Victor McKusick, the
father of human genetics, was involved and at Hopkins at the time). Before the
age of 30, Henrietta, so vibrant and popular and caring, had died quite quickly
of cervical cancer, eight months after the initial diagnosis. This was in the early 50s. Some of her cells were saved and
were soon found to divide ‘forever’ rather than die after about 50 cell divisions.
This finding turned out to be earth-shattering in the medical research field
and made so many other discoveries possible.
But were the cells donated
or taken (stolen) without her knowledge or the permission of her family?
HeLa cells were soon in
great demand in labs all over the world. Since scientific research is more ‘shared’
than other fields, HeLa cells were available at reasonable cost and were the
first mammalian cells found to be ‘immortal’ (to be able to live outside the
body) – chicken cells previously had been found to have this characteristic but
humans are mammals and research needs to be done on them sooner or later.
The Controversy
HeLa cell lines were
incredibly important to medical research (HIV drugs, etc.) but in the early 50s
research was still being done on people, especially minorities, without their
permission. Was this the case with Henrietta? It depends on how you look at it.
And should her family and descendants be proud of her place in history or
should they have received money from the sale and distribution of her cell line
to labs all over the world?
Today, many members of the
Lacks family cannot afford health care. . . .
About Privacy or the Invasion Thereof – and a
Question of Ethics
 |
| HeLa Cells |
After a while, articles
appeared about HeLa and someone called the woman Helen Lane or Helen Larson,
or, in the 70s when I was in grad school, Helen Latham – all generally white
women’s names.
Henrietta Lacks, however,
was an African American from southern Virginia. Some of her family never made it
past fourth grade while others joined the military or were incarcerated or
became addicts or attended graduate school or died as a teen in a mental institution
(Crownsville, MD). Much like the rest of the country during these times.
For years after HeLa cells
became so valuable, members of the Lacks family were asked for vials of their
blood to determine if their normal cells had the same characteristics as Henrietta’s
cancer cells. Family members thought tests on their cells would determine if
they had cancer or would develop it so they waited patiently for results that
never came.
HeLa cells traveled into
outer space. They were mixed with mouse cells and grown in the lab. Members of
the family thought Henrietta would become a mouse-human or a clone. Medical
researchers didn’t explain well enough so the family could understand – was
that common in the 50s? Probably so. It was thought that the average person
could not understand DNA so nobody bothered to explain in terms they could comprehend.
Could the family sue on the
grounds that someone revealed Henrietta’s name and medical records? (They
could, today.) And what about the statute of limitations?
Can one sell a lung or a
kidney? How about cells? How about patenting them, if they are unique?
 |
| Henrietta's Daughter with a Photograph of HeLa Chromosomes |
A Profound Discovery
The reader will learn about
the vaccine for hepatitis B, how a hemophiliac found out he had the answer in
his cells and convinced a Nobel-winning medical researcher to work on the
problem and solve it! He gave his cells exclusively to that researcher in lieu
of making a fortune on them. Such is the way science has been done.
Where does HeLa fit into the
history of medical research? Can one sue a medical researcher for using one’s
body in research without one’s permission? What about releasing a patient’s
photo? What if the spleen or liver or pancreas in question is cancerous and
must be removed – to whom does that removed organ now belong? All these are
questions that you may not have thought about but now will, thanks to Rebecca
Skloot’s book.
How the Book Reads
Henrietta
is a fairly long book, with 38 fairly short chapters. It is not written
chronologically but reads so smoothly you may not be aware of it. It is a bit about
science but also about a family and a period in American history – the Fifties
of Black Americans in rural Virginia and inner-city Baltimore, as well as the
beginning of rapidly growing medical research, especially genetics. This was
before the time of HIPPA and consent was not needed to use human subjects in
research. Perhaps because of the Lacks family, this is now changed.
Henrietta is a human-interest story as well as a book that glosses over the science – so
don’t let a lack of technical knowledge stop you from reading it.
I did, however, think the
book could have been tighter. It focused on the same threads over and over
again and might have made the points better with less emphasis. However, as it
is, it was a New York Times bestseller for more than six years and reached
number one - but it took ten years to write.
The author includes a
timeline, a list of characters, an afterward, and nine pages of
acknowledgements!
Questions Remain
Should the Lacks family have
received a percentage of the monetary benefit from Henrietta’s cells,
particularly since they believe the cells were stolen from her? Vials of her
cell line could be bought for $25 or, today, for up to $10,000.
Food for thought. And for
ethicists. And for liberal arts majors to ponder – and voters and researchers
and you!
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*p. 254 - “Hela
is the native name of the country of Sri Lanka, . . . of a defunct German
tractor company, an award-winning Shih-Tsu dog, . . . a seaside resort in
Poland, ad advertising firm in Switzerland, a Danish boat where people gather
to drink vodka and watch films, and a Marvel comic book character who appears
in several online games; a seven-foot-tall, half-black, half-white goddess
who’s part dead and part alive. . . responsible for plagues, sickness and
catastrophes; she’s immune to fire, radiation, toxins, corrosives, disease and
aging. She can also levitate and control people’s minds.”
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