If you read only one book this year, pick The Immortal Life of Henrietta Lacks. Rebecca Skloot, an accomplished science and creative nonfiction author has written a story of our past, our present and, if we are not mindful, the Brave New World of our future. The Immortal Life of Henrietta Lacks resonates on many levels. Not only is it a richly drawn biography of a poor African American and her family, but also a layperson’s primer to the evolution of cell culture and the world of medical research. Without taking away from Henrietta’s story or the history of cell culture, it is also the story of Rebecca Skloot’s remarkable journey into both worlds.
Henrietta Lacks, of Clover, Virginia, the granddaughter of slaves, contracted cervical cancer and had she not walked into segregated Johns Hopkins in January of 1951, we would never have known her. Because the medical world was desperate to discover a cure for deadly cervical cancer, before the doctor treated her tumor he “picked up a sharp knife and shaved two dime-sized pieces of tissue from Henrietta’s cervix: one from her tumor, and one from the healthy cervical tissue nearby.” The dime sized piece from the tumor turned medical research upside down.
The cancerous cells taken from Henrietta in 1951 (and all their offspring) are alive and well today in thousands of research laboratories throughout the world, identified as HeLa, the first two letters of her first and last name. Hers were the first human cells to become immortal: “a continuously dividing line of cells all descended from one original sample.” What did this mean to medical research? These prolific cells, once growing, were sent all over the world and eventually played a pivotal part in developing vaccines for polio, HPV, HIV, and hosts of other medical breakthroughs.
As Skloot introduces the reader to the evolution of cell culture, she is never more than one chapter away from her search for the remaining members of the Lacks family. Henrietta had died months after her surgery and left behind a husband, five children, and a community of cousins, friends, and, unknown to her family, her living cells.
It was not until 1971 that any of the Lacks family knew of Henrietta’s cells. Bobbette Lacks, Henrietta’s daughter-in-law, was lunching with a friend whose son-in-law was visiting from Washington D.C., where he worked at the National Cancer Institute. When the man heard her married name, Lacks, he revealed that for years he had been studying the cells of a woman named Henrietta Lacks. The startling facts were explosive and almost unbelievable to the family who had been told nothing. By the time Rebecca Skloot came to the family in 1999, in search of Henrietta’s story, her requests for information were met with ferocious skepticism. It took years to gain the family’s trust, but once gained, Skloot became the embedded reporter, taking us along on their journey for the truth. With warmth and respect Skloot takes us into the Lacks family, primarily through Henrietta’s youngest daughter, Deborah, who was only two when her mother died.
The misinformation and lack of access to medical records is only part of the story Skloot uncovers for herself and the family. This is a crash course in the history of medical/bio ethics where everything from segregation, to the KKK, to the Tuskegee Institute, to the Nuremberg Codes comes into the picture. Issues of disclosure to patients or donors continue to surround and confound medical research. The questions of who owns our tissues and how should they be used once they are “donated” are carefully laid out with current case law and court findings. Medical research is big business and cells with a possible financial as well as curative future are now patented. There is money to be made and suddenly we are back to ethics, but the playing field is greatly expanding.
Skloot writes with depth and lucidity. Reading the book won’t make us experts in cells, DNA, transplants or the state of research as we know it today, but she gives us enough information to think hard about tomorrow and the laws that will inevitably be enacted. Who will the laws benefit: world medical health and/or the monetary health of research institutes, foreign or domestic? Should donors be part of the patent? How much do our elected officials understand and to whom will these lawmakers look for answers.
The Immortal Life of Henrietta Lacks is a book with heart and integrity. Do not miss this one. -Sunny Solomon