The Immortal Life of Henrietta Lacks by Rebecca Skloot

As a press officer at UCLA Health Sciences from 1988-94, I responded to dozens of inquiries a month from health and medical reporters who requested information about a medical topic or asked to speak to an expert about a research finding published in a medical journal. Less often, a journalist might call to inquire about a patient complaint, an inevitable occurrence in a large academic medical center. In one instance, a UCLA patient named John Moore, a Seattle businessman and survivor of hairy cell leukemia, discovered his cells were being used to develop new cancer therapies without his knowledge or permission. He sued for the rights to his own tissue, which generated both legal and media interest in the case, spanning several years. But in the end, Moore lost the courtroom battle in appeals to the California Supreme Court. The landmark 1990 decision ruled that the patient does not retain the rights to tissue removed from their body. The court cited the defendants (Regents of the University of California, UCLA staff and two pharmaceutical companies) for not informing Moore about the  research.

This summer I picked up a book that took me right back to the UCLA press office and media calls about John Moore. When I first heard about The Immortal Life Of Henrietta Lacks (2010) by Rebecca Skloot, I was intrigued because it tells the tragic but also fortuitous story of a poor black mother of five whose cell line led to an untold number of new therapies in medicine. Forty years before Moore, Lacks was a cervical cancer patient at the Johns Hopkins University Medical Center in Baltimore, Maryland. Her cells were used after her death in 1951, and her husband and children were never informed. For decades, Lacks' identify was anonymous, then misrepresented, and finally known. Her cells proved to be so beneficial and prolific that they've been used worldwide for more than sixty years to develop therapies for problems like polio and AIDS. At least one expert considers the He-La (Henrietta Lacks) cell line to be one of the most important scientific discoveries in the past 100 years.

Science writer Rebecca Skloot set out to investigate the history of the woman and the family she left behind, and to understand how the cells were acquired and led to one of the most influential discoveries in medical history. A full decade later, the book was published to critical acclaim, received numerous awards, and became required reading for at least one freshmen class entering UCLA. The science is conveyed in easily understood terms, but it's Henrietta's family's story that tugs at the heart and won't let go, even after the book is closed. This is a saga of love, loss, poverty, ignorance, abuse and neglect which unfolds alongside an astonishing explosion of research and modern medicine made possible by Henrietta's cells. The medical establishment zooms skyward while Henrietta's heirs and extended family barely stay afloat in their downtrodden urban neighborhood.

Skloot's unrelenting persistence to seek out family members and understand Henrietta's illness and treatment, the research her cells launched, and the impact of all of this on the family makes for a heartfelt, compelling read. The human toll is most vivid in Deborah, who was a baby when her mother died. She struggles through life, a hole in her heart because she misses the mother she never knew, questions if her mother might still be alive since her cells live, and resents the medical establishment which never explained anything to the family or acknowledged Henrietta as the woman behind the cells. Her siblings share many of Deborah's feelings about their mother and what happened to her, and to them without her. Immersed in the family's conspiracy theories and confusion about the cells and her mother's immortality, Deborah eventually bonds with Skloot to come to terms with her mother's legacy, but the road she travels is littered with challenges.

Social justice themes weave an undercurrent of raw emotion through the pages of the book. Poverty, lack of education, poor access to health care, isolation, and racism fuel distrust among Henrietta's children. The reader rides along with Skloot to visit the people and places who comprised Henrietta's short life on earth. We witness the anger they feel because they're denied the medical care her cells created. We hear the unaltered dialect and voices of people wrought by grief and suspicion over Henrietta's death and immortality. But it's the honesty and beauty of this family Skloot reveals through her storytelling that remains at long last. Their wants and needs are not that different from our wants and needs, their emotions our emotions, and their tragedy becomes our tragedy.

To her credit, Skloot's decade-long journey resonates as an unforgettable and uncompromising tale in which she turns over every stone, lumbers down every dusty path, and exposes every piece of evidence to breathe life into the characters on both sides of the historical account. This is a ride worth taking because it speaks not just to one woman's legacy, but to society's ills in the face of unprecedented contribution and medical achievement.