Within our cells are codes that offer great detail on who we are, how we will respond to outside infections and stimuli and what we will pass on to our children. Information stored within our cells is very valuable, not only to the person carrying the cells but to scientists seeking to study the intricacies of these tiny particles.
Rebecca Skloot traces the story of one such cell line that gained both value and renown and also became embroiled in controversy in her remarkable work, "The Immortal Life of Henrietta Lacks."
Henrietta Lacks was a product of the poor rural South. She and her husband David, known as Day, joined those migrating north, seeking opportunity and a less race-based society as they traveled from the tobacco fields of Virginia to the thriving factory industry of the North. There they became members of East Baltimore's growing black community as Henrietta raised her beloved babies, the eldest of whom had mental challenges that kept her close by her mother's side.
While Henrietta was known as mother, teacher and caregiver to many, Day's reputation was a bit less reliable. After spending a lifetime beside Henrietta, first as cousin and playmate and now as husband, Day had a wandering eye that often got the better of him. His philandering led to disease, which he passed along to his faithful wife.
As she began to feel unbearable pain, she assumed it to be the result of venereal disease and went for treatment at Johns Hopkins Medical Center, an imposing institution that was a community mainstay due to its devotion to treating charity cases among the city's poor black residents.
After a few diagnostic missteps, doctors discovered a fast-growing cancer within Henrietta that ultimately proved too virile for mid-century medicine to conquer. Henrietta, barely in her 30s and only months after giving birth, died a painful and lonely death, leaving behind five children including her now institutionalized eldest daughter, a despondent husband and a family left with many more questions than answers.
Were this a story about Henrietta, it would be a tragic representation of the hardships of life in the mid-century urban North. But this is as much about her legacy as it is about her life, a legacy imprinted in the minds and hearts of those who knew her but even more so in her biological thumbprint, a cell strain denoted HeLa. These cells, taken by Hopkins researchers during her illness without her permission, were the most resilient that had yet been discovered, thriving and reproducing in unexpected ways. This made them a very desirable research medium, a fact that Hopkins researcher George Gey immediately recognized as he sought to reproduce and distribute thousands of vials of these cells for the good of science.
Before long, thousands of researchers working on everything from NASA explorations to AIDS research were using these cells as their reputation began to grow and live on long after Henrietta was buried in an unmarked grave, her own story all but lost to history.
While HeLa may have been famous in the scientific community, it was unknown by the Lackses, a family that struggled with crime, neglect, poverty, disability and abuse. As researchers began to trace the cells back to the family and the family began to learn more about the cells, miscommunication, lies, misunderstandings and distrust built a larger wall between white scientists and reporters who saw these cells as a curiosity and a research source and the black family who saw these cells as family.
Rebecca Skloot, a young white, idealistic journalist with no connection to the Lackses apart from a fascination in the story instilled by a middle-school biology teacher, sought to right the wrongs of the past by telling the full story. To do this, she embarked on her own long journey to gain trust and understanding. This journey forms the core of the book.
Jumping from past to present, the book covers journalism, race history, medical ethics and even personal reckoning as Skloot develops a tenuous relationship with the Lacks family, especially the skittish and volatile remaining daughter, Deborah.
This book forms a pinnacle study, reconstructing the social history of a disenfranchised family and community with a balanced debate on medical ethics on issues still raging in the field of medical research.
This is therefore not a book just for ethicists, lawyers, medical researchers or urban historians. This is a chronicle that demands to be read, thought through and reckoned with by us all.
Adera Causey is curator of education at the Hunter Museum of American Art.