Rebecca Skloot

Superb. Has it all: human interest, sympathy for hardship, page-turning story, clear and fascinating scientific explanation. Even elements of mystery: why this one woman's cells? why this extreme blanking out of Henrietta and her family? one more mystery: why has Skloot not published another book?

I actually started reading this book after reading an article about how it was required reading in some school, and some mother protested it as pornographic. My little mind went, wait, how could this be pornographic? It's a story about HeLa and the woman they harvested the cells from. So I read it. Not only is there not ONE reference that could be considered pornographic ( the only thing I think she could perhaps be referencing is the radiation treatment and the way they go about it in the show more 50s) but it is a sad, sad tale of what the medical industry has done to this family. Well written, poignant, and sad beyond belief. The very least this family should get is medical care, and the best of, for that matter. It really goes to show that the road to hell is paved with good intentions. The original doctor really, truly was altruistic is his endeavor to discover things to help the human race. He gave samples for free, to anyone who wanted them. Thereafter, the corporations took over, and anything they discovered (which are legion) while using the HeLa cells was used to turn a huge profit for themselves.

So, in retrospect, I guess it is kinda pornographic, in the manner in which Big Medical literally screws this family out of anything in compensation for their mother's (unknowing and unwitting) contributions to modern medicine. show less

Since I'm someone who gets riled up thinking about Credit Reporting Bureaus making money off my personal financial information, I'm entirely sympathetic to Henrietta Lacks's family members' anger over the profits made by some in the course of culturing HeLa cells (initially taken from their mother's cervix) for scientific research purposes. Complaints by Henrietta's middle-aged children that although their deceased mother's cancer cells are immortal and world-famous and have made money for show more some and significant careers for many, they themselves cannot even afford medical insurance are revelatory. There is something very wrong with such a picture. Skloot's "Afterword" in which she summarizes the current state of tissue and cell "donor" rights, or lack thereof, is informative and unsettling. Who knew that a simple blood test, or infant circumcision, might mean that one's DNA may be stored, studied, bought & sold with few restrictions?
This reportage is heavy on the human interest story, a bit less so on the science detail. It made me think of Alice Notley's long poem, "In the Pines," in which Notley includes lines such as the following which seem to echo some of the issues brought up in Skloot's book:
"Keep your hands off my neurons."
"The code's not just genes but songs . . . . The code's not just genes but tears."
"I didn't give you genes, I gave you poems . . . . It's all the same being, wrapped up." show less

In The Immortal Life of Henrietta Lacks, Rebecca Skloot examines the life and legacies – personal and scientific – of Henrietta Lacks, an African American woman who died of cervical cancer in 1951, but whose cells live on from samples her physicians took during the course of her treatment. While the majority of Lacks’ family and descendants lived in poverty outside of Baltimore, scientists around the world made significant breakthroughs from tests they performed using her cells. Skloot show more chronicles not only the way the family began to learn of how their mother was used in experimentation, but also how she helped them to piece the story together. She alternates between the lives of Henrietta and her family from the earliest record until Rebecca contacted them, the trajectory of the first cultivated HeLa cells through their current place in laboratories around the world, and the development of systems of medical and legal ethics.
In examining medical ethics, Skloot uncovers a cavalier attitude that has run rampant throughout the field. For example, a New York oncologist injected HeLa cells into patients to see if they would develop cancer. When he was investigated and asked why he did not inject them into himself, Chester Southam replied, “There are relatively few skilled cancer researchers, and it seemed stupid to take even the little risk,” though he had no trouble risking his patients’ lives (p. 134). Though he faced some repercussions and the NIH changed their informed consent requirements, it ended up having little long-term effect on Southam’s career (p. 135). The Tuskegee Experiments combined with black oral tradition telling of “‘night doctors’ who kidnapped black people for research” predisposed the Lacks family to treat with suspicion anyone researching Henrietta (p. 135). To them, the people at Johns Hopkins had taken advantage of their lack of education and Henrietta’s desperation. After all, doctors at Hopkins felt “that since patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment” (p. 165). Discussing the lack of informed consent in a Hopkins study of lead levels in children, Skloot writes, “One judge compared the study to Southam’s HeLa injections, the Tuskegee study, and Nazi research… But today when people talk about the history of Hopkins’ relationship with the black community, the story many of them hold up as the worst offense is that of Henrietta Lacks – a black woman whose body, they say, was exploited by white scientists” (p. 168).
The family only learned that Henrietta Lacks’ cells were still alive by chance when Bobbette Lacks visited a friend in 1973. That friend’s brother-in-law just happened to be in town and was a researcher who used HeLa in his work (p. 179-180). The family learned more partially through their own research, but also as they found themselves the subjects of reporters working for Rolling Stone and the BBC (p. 197, 218-221). Despite this attention and learning about the breakthroughs HeLa made possible, the family still struggled to make ends meet. In 2000, Deborah, Henrietta’s daughter, made it clear to Rebecca that she had to get the facts straight if she was to receive the family’s blessing in telling Henrietta’s story (p. 233). Her brother, Zakariyya, was even clearer when he said, “Only people that can get any good from my mother cells is the people that got money, and whoever sellin them cells – they get rich off our mother and we got nothing” (p. 247).
In summing up the then-current perspective on medical ethics regarding tissue samples, Skloot writes, “There are, essentially, two issues to deal with: consent and money. For most people, knowing if and how their tissues are being used in research is a far bigger issue than profiting from them. Yet when this book went to press, storing blood and tissues for research did not legally required informed consent, because the law governing such things doesn’t generally apply to tissue research” (p. 317). Further, the law views samples as something a person voluntarily parted with and thus treats them akin to abandoned property or garbage (p. 317). Skloot concludes, “When it comes to money, the question isn’t whether human tissues and tissue research will be commercialized. They are and will continue to be… The question is how to deal with this commercialization – whether scientists should be required to tell people their tissues may be used for profit, and where the people who donate those raw materials fit into that marketplace" (p. 322). As an example, Ardais pays Beth Israel Deaconess Medical Center, Duke University Medical Center, and others for exclusive access to tissues (p. 322) while Myriad Genetics uses their patents of the BRCA1 and BRCA2 genes to control who and how breast cancer research is done (p. 323-324). While Skloot revealed the manner in which one woman and her family were taken advantage of by the medical system, she also demonstrates how Henrietta Lacks’ story fits into a larger pattern of exploitation. show less