The immortal life of Henrietta Lacks

  When it first came out, I had read reviews, heard author interviews, and made sure that our local library had a copy, but I had not read it. Now, I have just finished listening to the audio version of the book, and it more than lives up to its reputation. I recommend it as an assignment for advanced high school students or beginning college students, because a student could write about many different subjects after reading it. And it is a good read, so anyone could enjoy it.

  In an interview, the author mentioned that she had spent a great deal of time rearranging the different threads of the narrative so that it flowed smoothly. She succeeded. Planning was needed to tell many different stories at the same time, and they all have to fit together without getting confused or boring.

  First, Skloot tells the story of Henrietta Lacks, who had the misfortune of getting a very aggressive cervical cancer when she still had small children. She grew up as a poor black daughter of Virginia sharecroppers. She married a cousin and moved to Baltimore, where her husband worked in the steel mill during World War II. Doctors at Johns Hopkins treated the poor gratis in return for using them as test subjects in research, and Henrietta was one of those charity cases. A sample of her tumor was removed by doctors and studied in the lab. Those cells, named HeLa, became the first human cell line that could replicate outside of the human body, and HeLa cells were critical for medical research in the second half of the 20th century.

  At the same time, Skoot tells the story of George Guy, a selfless researcher at Johns Hopkins Medical School, who managed to keep Henrietta's tumor cells alive and replicating. He kept spending his own money to get equipment for his lab, and he gave the replicating cells away free to other researchers. Eventually, biological supply companies started up and ultimately make billions of dollars supplying Henrietta's cells and their mutated descendants to researchers, but neither Guy nor Hopkins saw any of that money.

  Skloot also tells the story of how Henrietta's children gradually learned that part of their mother was still alive, and that the cells from her cancer had made a major contribution to modern medicine. Unfortunately, no one before Skloot bothers to figure out what they understand about medicine or explain clearly to them what it means for part of her to be alive and replicating. Only after many years of confusion, anger, worry, and stress does someone explain these facts and give two of her children a tour of a facility that stores HeLa cells and explain these things.

  The author tells the story of black/white relations in Baltimore and rural Virginia. The central character of the book arises here: Deborah, Henrietta's daughter. After Henrietta's death, her children are mistreated by their stepmother and other relatives, and they lead a hard life with no small measure of misfortune.

  Skloot also recounts the history of the development of informed consent in human subjects research in the United States. When Henrietta died, informed consent was not required. Today, the protections of institutional review boards are strong. The first American doctors to refuse to experiment on patients without their knowledge or consent were Jewish doctors keenly aware of the history of Nazi medical experiments in death camps. The United States had signed the Nuremburg code of ethics in medical research but had never implemented it into law until after these protests by conscientious doctors began.

  Another story that is woven in among the rest is the story of the growth of the biotech industrial complex. The laws surrounding this industry and its claims to intellectual property did not exist when Henrietta Lacks died, and Skloot tells of the evolution of the legal framework governing this industry through the court cases where patients tried to assert their rights to their own body parts, and the complex situations that have developed from those precedents. One irony of the current situation: almost everyone involved in the system of using biological materials can make money except the patient from whom the material is taken.

  The final story is Skloot's own: how she came to be obsessed with this story, and the difficult years she spent piecing it together and working with the Lacks family. In an interview, she said that originally she did not want to have herself in the book, but it became necessary, because she became one of the agents in straightening out the decades of misunderstanding that plagued Henrietta's story.

  Skloot does a masterful job of controlling the emotional response of the reader to keep you reading. The audio version of the book is also well-produced, and it ends with an interview with the author.