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. ( )

This book joins my summer read line-up of challenging, important titles. A demanding read, not because of the writing—thoughtful, fluid, engaging, but because of the topics presented: race, class, ethics, family trauma.

I read a copy that I found in a collection of books left by a friend who passed away in January. She had annotated the text, so it was as if I were reading and discussing the book with her as I went. This could have added to the difficulty of the reading, but instead, it helped. I knew Lisa had already engaged the material, perhaps used it as a text for one of her classes. Her comments and company made me brave. ( )

This is an excellent book. The balance between a story of the history of the Hela cells and the story of the family of Henrietta Lacks is perfect. I am so impressed with the level of respect and care Rebecca Skloot took in telling the story of the Lacks family. Highly recommend. ( )