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The Immortal Life of Henrietta Lacks

2013; Lippincott Williams & Wilkins; Volume: 117; Issue: 1 Linguagem: Inglês

10.1213/ane.0b013e31828bfecc

1526-7598

Dolores B. Njoku,

Biomedical Ethics and Regulation

"Those who do not learn from history are doomed to repeat it." George Santayana, The Life of Reason The Immortal life of Henrietta Lacks (HeLa) is the story of HeLa cells, one of the workhorses of modern biology. My laboratory is in the Ross Research Building at Johns Hopkins, where a large plaque pays tribute to the immortal Mrs. Lacks. The book consists of 3 entwined stories: the advances in medicine and biological science from HeLa cells, the tragic tale of Henrietta Lacks, a young, churchgoing, hard-working, African American woman with an unusually aggressive cancer, and the odyssey of Rebecca Skloot, a young Jewish woman who spent nearly a decade earning the trust of the Lacks family to tell Mrs. Lacks' story. The resulting narrative gives us a bird's eye view of Henrietta Lacks, whose cervical cancer cells were immortalized without her consent, whose contribution to science was obscured by false attribution to "Helen Lane," but whose cells advanced the care of patients worldwide. We learn about her world, her life, and how she succumbed to metastatic cervical cancer. We also learn how HeLa cells brought no benefit but years of confusion, hardship, and embitterment to her descendants, many of whom still live in Baltimore. The story of the Lacks family is rife with "family issues." It plays out like a reality television show that starts in the idyllic town called Clover and then spirals out of control in Baltimore. History has taught us that the Clover, Virginia, population of 438 in 2010 and now unincorporated, with its distinct racial boundaries, was not idyllic. Even so, in your heart you see the same struggles of adjusting from a family-centric existence in Clover to a city-centric life with all of its advantages and pitfalls. Some of us can also relate to the anxiety that grips families when one member is thrust into the medical system. Fortunately, in all of the seeming chaos, there is hope for the future for the descendants of the Lacks family. The book itself is part of this story: the Lacks family should benefit from scholarships from the Henrietta Lacks Foundation, set up by Rebecca Skloot. The author also gives us insight into her journey. Initially, she was greeted with suspicion and hostility by Henrietta's descendants, reflecting efforts by previous interlopers to take advantage of the Lacks' connection with HeLa cells. Over time, she becomes a friend, and even a confidant, helping the family understand the profound contributions that their ancestor made to medical science. The author evolves, forming deep bonds with a family she would never have known but for her drive to recognize Mrs. Henrietta Lacks. The story explores the ethical issues around the medical use of "discarded" tissue. Henrietta never gave consent, nor did anyone think to ask for consent, for the use of the tissue removed from her body. The author provides insight into the medical system in the 1950s and 1960s, the evolution of informed consent for research, and the similar questions that arise today in genetic research. The Immortal Life of Henrietta Lacks is filled with scientific facts, medical and ethical dilemmas, and social inequities that cause every reader to pause and reflect either from a patient, family member, or medical provider standpoint. As a physician–scientist at Johns Hopkins, I have always wondered why some of my patients would ask me whether anything I was doing would be used for research when I was obtaining consent for anesthesia. I hear stories from my patients that sound like legends. One recurring legend concerns a room where they grow people by taking your parts that you don't need. Perhaps the Lacks family experience contributed to that legend. This book helped me understand my patients' concerns. It also helped me understand the quiet heroism of Henrietta Lacks, whose almost life-sized plaque stands in my building. This book is a good read! It will offer insight to physicians and other health care providers. Take it from me, a reluctant reviewer. If we do not learn from history, it will repeat itself. Dolores B. Njoku, MD Department of Anesthesiology and Critical Care Medicine The Charlotte R. Bloomberg Childrens Center Johns Hopkins University Baltimore, Maryland [email protected]