The first “immortal” human cell line ever grown in culture, that then went on to become one of the most vital tools in medicine, originated from the cells of a poor black woman from Clover, Virginia, a descendant of free slaves. Her cells led to major breakthroughs in everything from polio to Parkinson’s disease and treatments for leukemia and hemophilia, and to advancements for studies on in vitro fertilization, cloning and gene mapping, and yet, as of last year, her body was still in an unmarked grave, her name and history obscured.
It is yet another one of those grave social injustices that you may have never of heard of before, but thanks to The Immortal Life of Henrietta Lacks, that will change. Author Rebecca Skloot’s inquisitiveness, thorough research, and vivid narration resurrect this remarkable story.
Back in 1951, when Henrietta Lacks, a 31-year-old mother of five, was a patient at Johns Hopkins hospital’s “colored ward,” doctors removed a dime-size sample of her cancer-ridden cervix without her permission and without informing her. Scientists, like George Gey (who first handled the study), had been trying to establish continuously reproducing cells for years for use in medical research, but cells never lasted very long. It turned out that Henrietta’s did. HeLa cells (named from the first two letters of her first and last name) grew, with what Skloot describes as, “mythological intensity,” So much so, in fact, that Gey began sharing them with others in the field. They went to the Tuskegee Institute where the first ever cell production factory was established, and then all around the world, as far as Chile, Amsterdam, and India; then onto the for-profit venture Microbiological Associates, and beyond.
When Lacks succumbed to the disease some eight months after her diagnosis, the legacy of her cells would later become a source of confusion and outrage among her family. Today, HeLa cells are still the most widely utilized in labs all across the world and are bought and sold by the billions. And her family, many of whom have lived in poverty all of their lives, never knew about any of this until 20 years after her death. Her husband, Day, had not been informed about the tissue samples or the astounding things that were done with them; the family found out about the cells through reporters, who, as soon as Henrietta’s real name was leaked, began to contact them with questions that lead them to believe that part of Henrietta was still alive in a lab somewhere, somehow.
Rebecca Skloot, a science journalist, was a curious high school student when she first became intrigued with the story of the woman behind HeLa, and in 1999 she began a decade-long journey of discovery. After years of feeling taken advantage of by doctors, scientists, and journalists, to say that the Lacks family was reluctant to speak with Skloot was an understatement. However, her patience and perseverance paid off and the author was able to find a real connection, especially with Deborah Lacks, Henrietta’s daughter. Thanks in part to this bond, the book is not only a tribute to the scientific of wonder of Henrietta Lacks, but a touching portrait of a vibrant, beautiful, and nurturing young woman and a family torn apart after losing her. Skloot’s biography flows like a novel and the scientific explanations are clearly deciphered for those of us whose memories of biology classes past are more than a little dim.
Scientists have grown some 50 million metric tons of Henrietta’s cells; NASA launched HeLa into orbit to test how human cells react in zero-gravity; there are over 60,000 HeLa-related scientific studies around the globe, and the medical establishment has profited handsomely from the cells. How on earth do you quantify the importance of such a gift?
The story of Henrietta leaves us wondering, still, about how scientific research should be conducted and who should profit. For all their grief, though, Lacks’ family never had much to go on, legally speaking, and Skloot brings to light the gray areas of medical ethics. While we would like to think that today nothing of this sort could happen again, we would be sorely mistaken, according to Skloot. Once our tissue is taken, say for a mole removal or such, it’s still not necessary to obtain consent to store those cells and then use those samples in research. It’s done all of the time. In fact, there are still so many loopholes in federal rules that anything could happen to that tissue. It is a reminder to all of us to read that fine print. Yes, it’s true, that great medical strides were made using HeLa, and without them who knows where we would be, but there is something very unsettling knowing that Henrietta’s offspring don’t have much to show for all the glory. As Deborah put it, “Truth be told, I can’t get mad at science, because it help people live….but I won’t lie, I would like to get some health insurance so that I don’t got to pay all that money every month for drugs my mother cells probably helped make.”
There are many intimate moments throughout the book that bring the reader in, but easily one of the most touching is when Deborah and her brother Zakariyya are taken into the lab of Johns Hopkins by a thoughtful researcher, where for the very first time, they are “reunited” with their mother: a frozen vial of HeLa cells, which Deborah warms in her hands, kisses, and whispers to, “You’re famous, just nobody knows it.”
This is a worthy, informative, and heart-wrenching read which Skloot has written with great respect, compassion and insight. Her striking tribute helps the healing begin and makes Henrietta’s life immortal indeed.