Stars: ★★★★★ (Study This Book)

Premise

In 1951, Johns Hopkins treated a young woman named Henrietta Lacks for aggressive cervical cancer. During these treatments, they biopsied her tumor and began replicating those cells in test tubes. Those cells replicated exponentially in ways that no other cells have done before or since. However, no one asked Henrietta for consent to harvest or research her cells. These cells have become ubiquitous in global science research, and this book walks through how no one in her family has benefitted from the commercialization of the cells and the fact that they didn’t even know about the existence of the cells for decades.

Loved

1. The humanity of the Lacks Family
   This book is not a biography, even though the first several chapter detail the life of Henrietta Lacks. It also examines the life of Deborah, her daughter, and the trajectory of the HeLa cells. It feels both wide ranging and focused. The author examines the trauma Henrietta endured during her final few months in and out of the hospital without turning the book into “poverty porn” where the reader gawks at the suffering of a young black woman.
   
   The author then describes the trajectory of her own relationship with Henrietta’s children, walking through the reasons that they refused to talk to her at first and the necessary work to gain their trust. She walks through the ways that they all supported one another, both the stories with happy endings those without. The people she chronicles are all real, and they leap off the page as such. These are clearly not characters in a story, but humans who loved, rejoiced, and suffered in so many ways.
   
   
2. The detailed scientific explanations throughout the book
   There were some paragraphs explaining telomeres and DNA sequencing that I had to read multiple times, but I appreciate that they were included. The story of HeLa would have been incomplete without them. I was tempted to skip this information because the human interest parts of the story are much more real, but I also wanted to know how the cells could live forever when it seemed like no one else’s in the world could do that. The explanations in the difference between cancer cells and normal cells illuminated for me the way they grow and how this impacts the human body.
   
   
3. The author treats the religion of the family respectfully.
   Rebecca Skloot explains early in the book that she is not religious in any way, and atheist scientists are frequently disdainful of religion. She details some religious experiences with the family that she could have easily mocked, but instead she described them in the voice of a reporter. As one member of the Lacks family reads her Scriptures about resurrection, she acknowledges how these explanations make more sense logical sense than regenerating telomeres and HPV impacts on DNA. As white Northerner walking into the home of a Southern black family whose religion was vital to them, the author recounts the tales with respect for the obvious cultural differences without denigrating their beliefs.

Didn’t Love

There were multiple times throughout the book that Henrietta’s children were invited to speak at conferences in honor of their mother’s contributions to science, even if those contributions were given without consent. The consistent theme was “we cannot give them any money,” but we want to recognize them. Often, that was enough for Deborah, Henrietta’s fourth child, but not for her three sons. Conferences pay large amounts of money to have keynote speakers, so it’s angering that none of them could manage to pay this family whom they wanted to recognize. I have no doubt they would have found a way to pay a person who was in high demand to speak at their conferences.

Lessons Learned

• There is still no law requiring consent for tissues to be used in research. Cells are now denoted using code numbers rather than the first two letters of the patient’s name in order to maintain some confidentiality, but any blood sample or removed organ can and likely is stored for future research and potential commercialization.
  
  I recently had my gallbladder removed, and I remember during my follow up phone call the doctor telling me that they found long term inflammation, which was consistent with my symptoms over the preceding year, but that they didn’t find any malignant tumors. While that was good news to me, I hadn’t realized they were doing any tests for caner. This book also made me realize that they likely stored parts of my gallbladder and will continue to use it for tests and other research without my ever knowing what happened.
  
• This is less a lesson learned and more a lesson reinforced, but the American system of healthcare is atrocious. The repeated complaint of the Lacks family was that HeLa cells led to vast medical advances around the world, but the children of the woman whose cells they were could not even afford health insurance. One of her sons came out of heart surgery $125,000 in debt. While Obamacare has made some headway in this area, there are so many ways in which the American healthcare system fails those who need it the most.

• The distrust that the Lacks family had in the medical profession was completely valid. The book describes the Tuskegee Syphilis Experiment, the way that Elsie Lacks had been experimented on as an institutionalized black child with epilepsy, experiments in which researchers injected people with HeLa cells to see if they grew cancer (which they did). American medical history is rife with these horrendous abuses of human rights, and the Lacks family was all too familiar with the risks.
  
  Henrietta’s husband had gangrene but wouldn’t allow an amputation because of what happened to his wife’s cells. Her son needed surgery but did not know what they would remove from his body while he was under anesthesia. At one point, researchers were taking multiple blood draws from Deborah to study her DNA sequence, but she thought they were tests to screen for the cancer her mother had – but she could never get the results of those tests. All of these concerns were based in fact. They had heard the stories, but they had also lived them. They had every reason to believe they would be manipulated and abused in a medical setting.

There are not many nonfiction books that I devour the way that I do novels, but it was almost impossible to put this book down. I was reading on Thanksgiving Day and kept picking it up in the kitchen between cooking dishes because I so desperately wanted to know what happened next. The book is impeccably researched but compellingly written.