A fascinating book for the science needs among us, a heart-rending book for those who feel the horrors of Henrietta’s life, an interesting ethical discussion about who owns your bits once you have them taken out.
I was astonished, even though I’d heard about Henrietta Lacks and her amazing cells, to find out how very far they’d gone, how much science had benefited from them. We have all sorts of medicines and understanding of cell functions, vaccines and grasp of cell culturing, all over the world. Henrietta’s astoundingly virulent cancer cells made the development of the polio vaccine possible, for example. The cells also forced researchers to use enhanced sterile techniques as if a HeLa cell got into your cell cultures it would kill off every other type of cell…
I’ve been meaning to read this book for ages and I’m glad I finally did. I am still curious about how such a virulent cancer developed- of course people at the time blamed Henrietta and accused her of sleeping around (she did have syphillis), but her husband’s role in giving her the virus that caused her cancer is never mentioned. I find that sad. I find it sad, too, that her family tossed her into an unmarked grave, unmourned by most of them for years.
The ethics of taking tissue samples from a dying woman without her consent remain huge, but as Sklootide identified in her research, we all end up donating our discarded bits whether we want to or not- they are sliced off of us and considered waste- unless someone wants to take them and use their DNA in research.
For me, this isn’t a big thing. I figure if they can use any of me that I’m no longer using, go for it. But the grinding poverty the Lacks family endured while Henrietta’s cells were re-sold (Johns Hopkins didn’t sell them- they shared them widely and free to aid research) seems evil. But then the grinding poverty and lack of access to medical care in the US IS wrong. A caring society would not allow it to persist. ( )

One of the best pieces of nonfiction I've read in years. ( )

Actually, read via audiobook. A fascinating story. ( )

Read this one for our Fall 2013 UNCG campus read with our first-year students. Found the content compelling and relatable - lots of perspectives that can be explored and discussed in our classes! Also very personally relevant. ( )

Science writer Rebecca Sloot dives into a study of medical ethics in the United States, (and the lack thereof), in this book about the theft of the HeLa cells, taken without consent or knowledge from the cancer ridden body of Henrietta Lacks, (an impoverished, thirty year old black mother of small children who was wracked with cervical cancer), while she was in the hospital for treatment. Her family was distressed. "Everybody always says Henrietta Lacks donated those cells but she didn't donate nothing. They took them and didn't ask."

Since 1951, the study of Henrietta's duable, prolific cells, (the first immortal cell line), led to breakthroughs in research and trials from the polio vaccine to in vitro fertilization, gene mapping, and cloning.

Henrietta was a pilfered pioneer; her cells sold to medical labs the world over, made millions of dollars for medical industry, but those profiting failed to inform, obtain consent, or compensate Henrietta's family, who were repeatedly lied to by doctors. The family was horror stricken when, decades later, they found out their mother's cells were being kept alive in labs, sent into outer space, and put through countless trials; they wondered if Henrietta's soul was suffering from these scientific experiements.

"Hopkins say they gave them cells away," Lawrence, yelled, "but they made millions. It's not fair! She's the most important person in the world and her family living in poverty. If our mother so important to science, why can't we get health insurance?" The family never got a penny of the prodigious profit.

Skloot's book is a primarily a buddy story; the relationship is between the writer and Henrietta's daughter, Deborah, who grew up without her mother. Rebecca skillfully juggles a tale that features a history of rascism, poverty, and more as it relates to medical exploitation, along with the story of Deborah and the other Lackes as they struggle to make sense of what was done to their mother.

Another example of a biological patent appropriated without permission that Skloot includes in the book is that of John Moore. Moore had a rare cancer called hairy-cell Leukemia. His cells made rare proteins that could contribute to cancer therapies and the development of an AIDS vaccine.

Drug companies were willing to pay enormous sums to work with Moore's cells. Dr. David Golde, a cancer researcher at UCLA, told Moore he had to have his spleen removed and his tissue would be cremated. Golde, however, had entered into agreements with a biotech company that gave him stocks and financing worth more than $3.5 million to "commercially develop" and "scientifically investigate" the Mo cell line. At that point it's market value was estimated to be $3 billion.

"It was very dehumanizing to be thought of as Mo, to be referred to as Mo in the medical records: 'Saw Mo today' All of a sudden I was not the man Golde was putting his arm around, I was Mo, I was the cell line, like a piece of meat."

The idea of patient consent is a misleading formality overall. "The term informed consent first appeared in a document in 1957, in a civil court ruling on a patient named Martin Slago. He went under anesthesia for what he thought was a routine procedure and woke up permanently paralyzed from the waist down. The doctor hadn't told him the procedure carried any risks at all. The judge ruled against the doctor saying, "A physician violates his duty to the patient and subjects himself to liability if he withholds any facts which are necessary to form the basis of an intelligent consent by the patient to the proposed treatment. He wrote that there needed to be full disclosure of facts necessary to an informed consent."

Lack of honesty in the so-called medical consent process has created a profusion of problems for the public who rely on medical professionals to be fully candid and careful, not cavalier cons. As a patient safety activist, this story riled me up and raised even more questions about the medical industry than I had before. ( )