Schnaucl's Reviews > The Immortal Life of Henrietta Lacks

The Immortal Life of Henrietta Lacks by Rebecca Skloot
Rate this book
Clear rating

's review
Jul 13, 2011

really liked it
bookshelves: july, library, non-fiction, read_2011
Read from July 07 to 10, 2011 , read count: 1

Four and a half stars.

This was a well written, well researched book. It also has a bit of clever design. The narrative jumps back and forth through time and each chapter has a simple timeline at the top of the page and a notation showing when the events of the chapter take place.

There are several threads that run though this book and Skloot does an excellent job weaving them together to form a coherent whole.

One thread is the story of Henrietta Lacks, one is the fight of her decedents not only to gain recognition for their mother, but simply to understand how Henrietta's cells were used. Other threads involve the medical and scientific history of cell cultures, evolving medical ethics, the history of mistreatment of minorities by the medical establishment, and legal questions raised by cell culture research.

I'd heard of the Tuskegee airmen experiment, of course, but I didn't fully appreciate until reading this book the attitude the medical establishment had toward the poor (especially poor minorities).

It's probably helpful to point out for those who don't know that it's a relatively recent phenomenon that doctors are more honest with their patients about their diagnosis and prognosis. For a long time it was standard practice to simply lie when a patient had a fatal condition or poor prognosis. The thought was that patients with a poor prognosis would become stressed or overreact to the news so the hid it from them for their own good. This was also a time when people of all classes, but particularly the lower class, did not question doctors. Their authority was absolute.

John Hopkins, where Henrietta Lacks was treated for uterine cancer (which was actually originally misdiagnosed, and remained so for years after her death, although a correct diagnosis would not have changed her treatment), is located in a poor African-American community. John Hopkins founder left instructions that the indigent should be treated without charge and the hospital followed his wishes. However, the doctors believed that if a person couldn't pay they could at least contribute by taking part in medical experiments. But they didn't tell the patients they experimented on that they were using them as human research subjects. (This was prior to informed consent laws). So they would actually do things like inject a patient with cancer cells and not tell him.

That particular experiment lead to the resignation of three doctors who happened to be Jewish because they thought the patient should be informed. The doctor in charge basically accused them of being overly sensitive because of Nazi medical experimentation.

Informed consent was an issue of growing concerning and in 1966 the medical field debated rules and possible laws. Naturally, many doctors said that if patients were actually informed of things like being injected with cancer they'd overreact and say no so medical progress would stop. As we all know, informed consent did become law and there were no advances made in medicine since 1966. Oh, wait, no, informed consent laws passed and yet there were great advances in the medical field.

Henrietta Lacks went to John Hopkins because she felt a hardness inside her and was spotting when it wasn't her time of the month. She was diagnosed with cancer and subjected to radiation treatments that left her torso chard. As part of the procedure the doctor scraped some cells from the tumor and sent them to a lab that was trying to grow cultures of human tissue. HeLa (for Henrietta Lacks) was the first strain ever to grow successfully in culture. (It would turn out to be so virulent that it would easily contaminant other cultures to the tune of millions of dollars of loss every year). Henrietta Lacks was never asked for permission. Unfortunately, the treatment didn't work and she died in great pain not long after her first visit to John Hopkins.

Her husband initially denied permission for an autopsy but changed his mind when he thought an autopsy would somehow help his children. During the autopsy more cells were taken for culture.

One of the sad reoccurring themes in the book was the knowledge gap between the doctors and the Lackses. Deborah, Henrietta's only surviving daughter (she had another daughter, Elsie, in a mental institution who died at the age of 15 and likely suffered through medical experimentation of her own) spent her entire young adult life deathly afraid that she was going to develop the cancer that killed her mother at 30. When a doctor came to draw blood from the family members (to aid in identifying HeLa) she thought they were running a test for cancer and couldn't understand why no one would give her the results of the test and denied knowing anything about it. When contacted later the doctor claimed of course they understood what she was doing.

When Deborah had a chance to ask a leader in the cell culture field what her mother's cells had meant for science he handed her a medical textbook and said it contained everything she needed to know. I believe none of the Lacks children completed grade school. The idea that the doctor thought she could easily read and comprehend a medical textbook shows how disconnected the doctor was. Deborah and her family didn't really understand cell cloning. Deborah in wondered if her mother was constantly in pain because they were experimenting on her cells.

The culture and climate the Lackses grew up in is utterly foreign to me. It was not uncommon for first cousins to marry, and in fact Henrietta Lacks did marry her first cousin. The lack of education was also not unusual. The Lacks children were/are not stupid, just ignorant. At least some of Henrietta's great-grandchildren would go on to college and graduate school.

Then there are all the legal issues. The Lackses never sued although millions (or billions) have been made off Henrietta Lacks' cells. Another person, white, comfortably well off, did sue when his cells were sold without his knowledge or consent. He eventually lost the case because the court was worried that science would be slowed if people could patent and sell their own cells. As it stands, now scientists can patent cell lines and it turns out that financial concerns are indeed slowing the progress of science but the people making money are the scientists and corporations rather than the person who is the source of the tissue.

The afterward raises even more questions and issues, enough to start a second book. It's definitely a book I'd be interested in reading.



Sign into Goodreads to see if any of your friends have read The Immortal Life of Henrietta Lacks.
Sign In »

No comments have been added yet.