Friday, December 13, 2019

Book Review (OT): The Immortal Life of Henrietta Lacks


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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