The Immortal Life of Henrietta Lacks is several stories and issues wrapped up into one binding: biography, medical research, race relations and how both have changed (or not) since World War II. Using strains of human tissue cells is commonplace now in the early 21st century, but in the early 1950s this was more a thing of science fiction and medical daydreams as researchers struggled to keep cell colonies alive long enough to do one or two tests. Now, the “HeLa”1 cultures have evolved into multiple and copiously reproducing strains sufficient for many tests, and have done more to further progress in medical treatments than any one advance in the past sixty years.
Unfortunately, the Lacks family knew nothing of this until twenty-five years after the death of the woman from whom the original cells were taken. Why? In fairness to the medical world2, most people don’t ever know if their cells have been used in medical research…because medical professionals are not required to tell the patient, even post-HIPAA. The “discarded” tissue is the property of the institution which removed it. In the vast majority of the cases in which cells have been taken, the tissue is promptly disposed of in the nearest ‘biohazard’ container3 when the tests are done or the procedure over. Even in the few instances when the tissue is cultured for reasons other than a specifically ordered medical test, nothing comes of it. The cells die, they cannot be used, or any one of a number of reasons. In very few instances does anything come of it, either medically or financially; in 99.95 of the cases of excised tissue, there’s nothing to discuss.
Henrietta Lacks’ cervical tissue is the star of that .05% to the extent that the majority of people doing biological research since the 1950s know of this/these tissue culture(s). For decades, however, no one knew who the source of this foundation block of genetic and medical research was. Henrietta Lack, born in poverty in rural Virginia in 1920 moved to Baltimore when her husband began work at Bethlehem Steel’s Sparrows Point Shipyard there. She was treated at Johns Hopkins for what turned out to be a phenomenally aggressive form of cancer (even allowing for the sparsity of cancer treatments at the time, much less the general paucity of medical care for African Americans) and died at the age of 31. Before she died, however, two samples of her cervix were taken, and one ended up in the hands of George Gey, head of the Tissue Culture Laboratory at Johns Hopkins. This proved to be the breakthrough of which dreams and careers are made: Lacks’ tissues proved so easy to culture that, even with the technology of the time, they could be shipped long distances, remaining alive for considerable time if properly treated, and cultured again successfully at the destination. These cultures proved invaluable to medicine over the decades, used in projects ranging from Salk’s polio vaccine to sequencing the human genome. Discovering the identity of the original donor, was something of a bombshell, especially given the recent revelations about the true extent of the Tuskegee Syphilis Experiment and resulting tightening of regulations governing experimentation on humans. Discovering that the source donor was (whispers) black was upsetting to a good many people.
The book, and Lacks’ posthumous contributions to science, have been discussed elsewhere. It is a fascinating blend of dry science made human, history of medical research in the U.S. and the biography of a footnote in history, combined with Skloot’s own efforts to gain the trust of the surviving members of the Lacks family sufficiently to discover all she did. Justifiably suspicious of the media and medical personnel, the family at first refused to talk to this white person who represented all they mistrusted. Trust her they did in the end, providing as much information as they could about this woman who provided the foundation for so much medical research.
1at the time, cell cultures were referred to by a combination of the first two letters of the source’s first and last name, to preserve some anonymity
2for certain values of “fair” at any rate
3really. Trust me.