The Immortal Life of Henrietta Lacks, by Rebecca Skloot
This is the story of Henrietta Lacks, her HeLa cells, and her family’s struggle to learn about their long dead mother. It’s also a detective story, a story of medical conduct, a story of Jim Crow, a story of modern and historical psychology, a story of ethics, and a story of religious faith. It is even a love story. It is all of these things, and Rebecca Skloot has successfully merged them into one of the most fascinating books I’ve read in many years.
Until recently few knew about Henrietta Lacks the person, though cell culture researchers have known of the HeLa cell line for many decades. Taken from the cervical cancer that killed Henrietta in 1951, HeLa cells have become immortal, living in test tubes and freezers in the billions even now, more than 60 years after Henrietta’s death. Growing like the cancer they derived from, HeLa cells have been used to develop treatments for many diseases, but also have contaminated virtually ever other cell line that has been attempted. This book traces the history of the cells, their benefits, and the ethical questions that arose because of their use without the knowledge of anyone in Henrietta’s family.
But even more than that, this is a book about the struggle of Henrietta’s descendants to learn about the mother they never knew. A poor African-American family that has gone through many trials must now take on the trials of seeking out answers. At times breathtakingly sad, the story can at other times have you cheering for Henrietta’s youngest daughter Deborah and her extended family.
I highly recommend this book. Scientists will find the medical story captivating, both for the thrill of its discoveries and the questions raised about informed consent. Non-scientists should also be enthralled with the medical story, but will also see the broader questions of segregation, poverty, family, religious belief, and the sometimes expansive divide between scientists and the public.
Skloot’s writing is stellar. She easily conveys the medical and technical material in language everyone can understand. She is equally adept in communicating the depth of emotion and confusion and anger of Henrietta’s family.
David J. Kent has been a scientist for thirty-five years, is an avid science traveler, and an independent Abraham Lincoln historian. He is the author of Tesla: The Wizard of Electricity (now in its 5th printing) and two e-books: Nikola Tesla: Renewable Energy Ahead of Its Time and Abraham Lincoln and Nikola Tesla: Connected by Fate. His book on Thomas Edison is due in Barnes and Noble stores in spring 2016.
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David
Great review of an interesting book. I read it when it first came out, and had more mixed reactions to it. There is no question that the informed consent process, especially as applied to poor and minority people was terribly done in the early 50s. and later. This also applied to servicemen, prisoners and others. And yes an injustice was done to the family. But things changed drastically in the 60s and later, and now informed consent is about as good as it can be.
I have used Hela cells, and I fought against their contamination of my other cell lines. The science in the book is quite accurate, but I am not sure the writer has taken an appropriately dispassionate view of some of the claims of Ms. Lack’s family. This is not a scientific issue, but one of compensation for prior injustice, and that is a complex issue. Anyway, I am glad to see your review here, it is an important book.
Indeed, informed consent has changed drastically, mainly because of the outrage from these incidents. I’m reminded of how we often learn that things we once took for granted weren’t something to be proud of. In fact, I’m in the midst of a reevaluation of my lifelong aquarium fascination given the evolution of concerns about abuse, or simply insufficient habitat, for aquatic animals akin to what zoos went through as they evolved into “animal parks.”
Your concerns about “appropriately dispassionate” are probably well-founded. On the other hand, the author has no particular obligation to be dispassionate as the book is as much (more) about the family (and society) as it is about the cells. Either way, it reflects her viewpoint and other voices such as yours and mine and others are also valid. I’m glad I finally read this book as it has been on my to-read list for some time after being highly recommended to me by a colleague.
Fascinating article, as well as the comments…
I’m familiar with this partular case only through news media reports. However, I had an uncle who was among many sailors effectively used as human experimental subjects post WWII. Because of my own early career, I’m reluctant even to mention it and can’t elaborate. But it does illustrate how civil bureaucracies can justify overlooking individual human concerns from a utilitarian perspective. Regardless, how much “utility” should enter into the equation when humans are involved strikes me as a gray area. How much “harm” is acceptable when something has the potential to alleviate tremendous suffering, and what even constitutes harm?
These are the kinds of ethical discussions that really need to be had in societies such as our own, but both the will and the objectivity seem difficult to find. Perhaps it just reflects the distance we feel from these kinds of things.
I think the revelations of such ethical discordance is why it shouldn’t happen again (at least in the United States). The understanding that humans can’t be used as test subjects without their knowledge evolved slowly, but it was cases like this and the Tuskegee syphilis study (and, unfortunately, several others) that finally led to informed consent and stronger ethical standards. These ethical issues track to a large extent our racial discrimination practices as well. It highlights why people need to stand up for their rights, and why we need to be cognizant of the rights of others who may have been kept in the dark.
I suppose ethical dilemmas still exist. Where do we draw the line on cloning, on artificial intelligence, on treatment of cancer and contagious diseases, on mental illness? While the answers seem rather obvious when looking back on past cases, the answers to future concerns may not be so easy to agree on.
I know I’m diverging from consideration of the book itself. However, I agree with you completely. And it’s why I think discussion of these kinds of topics is important to the development of a civil ethic that doesn’t treat some individuals as being less worthy of protections. The temptation is to draw a line at a seemingly safe social distance, but the result is inevitably an overall erosion of trust in society. And your second paragraph very well sums up why this remains a relevant topic.
I definitely agree with you. It’s something we have to ensure we’re always aware of.