Social injustice and inequality get my blood boiling in the best way possible. Now that I’m out of school, I get less of a taste for these topics than I have in previous years (I was a sociology student) and it can be incredibly difficult to fill that void. The debates and class discussions, the readings and constant inundation with material on social issues are hard to replicate in the real world. So I turn to books as fodder in the hopes that I can find some small piece of enlightening, enraging, or difficult information, information to challenge and motivate me. Though I am still fine-tuning my ability to select the most engaging nonfiction, my alma mater UMBC helped a bit when it required incoming students to read Rebecca Skloot’s The Immortal Life of Henrietta Lacks. I dragged my feet on this one at first but was rewarded for recently renewing it from the library. Reading Skloot’s account of Henrietta Lacks’ life and legacy is, after all, a deeply rewarding experience, and the true story recounted within this book speaks volumes on racial and social inequality, medicine, family, and ethics.
Henrietta Lacks was a poor black woman who died of cervical cancer in the early 1950s but made untold posthumous contributions to medical science. She came from humble beginnings in Clover, Virginia, a member of a large tobacco-farming family. Lacks later moved with her husband to the Baltimore area, taking advantage of industrial job opportunities in the hopes that Henrietta and her husband could provide a better life for their children than what they had known. As a twentysomething mother of four with a fifth child on the way, Lacks felt a hard lump in her cervix which she believed to be cancerous. Seeking treatment at Johns Hopkins Hospital, Henrietta suffered through radiation therapy and the painful spread of cancer to innumerable other organs. At the age of 31, Henrietta succumbed to the disease that spread throughout her body, leaving behind a husband, five children, and a multitude of close relations.
But while at Hopkins, a sample of Henrietta’s cervical cancer cells were taken and submersed in culture medium, as was routinely done with cells from a whole host of Hopkins patients. Unlike the cells provided by other Hopkins patients, which often died within a few days, Henrietta’s grew at an unbelievable rate. George Gey was the head of tissue culture research at the hospital at the time, and he was quite generous with his stock of Henrietta’s seemingly immortal cells. Gey shared a few batches with other researchers who, in turn, were happy to share some of Henrietta’s cells with still more researchers since their initial batches multiplied so quickly. These cells, known within the medical community as HeLa cells, have been credited with assisting in some of the greatest scientific discoveries of the past sixty years, from the polio vaccine to cancer research, gene mapping, and cloning. But Henrietta’s permission was never secured before taking these cells and her husband only consented to a partial autopsy after much resistance. Further, the Lacks family did not realize until many years later that Henrietta’s cells were still living or that they had contributed to so many medical discoveries and research profits.
Skloot’s book covers not only the medical miracle of Henrietta’s cells, but also the racial, class, and ethical questions raised by the very existence of HeLa cells. In relentless pursuit of the Lacks family, Skloot travels to Baltimore and Clover, endlessly calling the Lacks family members to gather information for her book. Henrietta’s children were all reasonably distrustful of white people – the only time anyone with white skin tried to contact them, it was about Henrietta’s cells and it always left them feeling taken advantage of and unfairly treated. The refraining argument made by the Lacks family and Skloot is how their mother’s cells could provide so much to medicine, yet leave them unable to afford health insurance. Many members of the Lacks family had little education and thus a limited ability to grasp the complexity and details of how HeLa cells have been used. Though many of Henrietta’s children express great happiness to know that their mother’s cells have helped so many people in untold ways, it is a complicated and uneasy happiness, wrought with misunderstanding and the wrenching sadness of loss.
Much as Skloot attempts to uncover Henrietta’s story for readers, she also does so for the sake of Henrietta’s family since her children were so young at the time of her death. Skloot’s persistence as well as her sensitivity to the Lacks’ situation and her desire to share the story of the woman whose cells are so famous eventually help her break through to Henrietta’s children, in particular her daughter Deborah. Deborah has no memories of her mother and wants to learn more about Henrietta, to see her and understand how her cells can still be alive although she is not. Though Deborah is the family member to whom Skloot grows most close, even she was never fully trusting of her mother’s biographer. Deborah would only agree to go on long trips with Rebecca if they took separate cars and she frequently making frantic late-night calls to Skloot, questioning her intentions. Much of Skloot’s book rests upon not Henrietta’s story so much as that of her children, who are dealing with the repercussions of being HeLa’s kin and grappling with all that they never knew.
Ethical dilemmas are considered as well – in fact, Skloot devotes much of her afterword to the tissue rights debate, a realm of activism I never knew existed but have had a difficult time fleshing out. Henrietta Lacks is not the only person whose cells have made huge profits for scientists and the medical field, but her story has been by far the most unjustly obscured. Skloot does much justice to the myriad arguments for and against tissue rights at the end of her book, appropriately building upon her thorough exploration of the Lacks family’s experience.
Skloot gives voice to Henrietta and her family who, for far too long, were severed from the legacy of HeLa cells. By providing a name, a history, a family, and a voice for the woman who sacrificed these cells, Skloot forces readers to recognize the innumerable questions embedded in medical research ethics and their undeniable connections to issues of social and racial inequality.