By Barry Belmont, Editorial Board Member
Published February 26, 2013
Henrietta Lacks was a woman. She had a life. She had loves and joys, hardships and heartaches. She had a family. She had friends, hobbies, grudges. She held down a job and polished her toenails.
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Rebecca Skloot is also a woman. She lives the life of an author and journalist, writing about science and medicine. She, too, has a family, friends, hobbies, grudges. And she holds down a job and has polished her toenails. On Tuesday, she visited the University to discuss her New York Times Best Seller, “The Immortal Life of Henrietta Lacks.” Framed as a biography of cells and a story of people, her talk covered aspects of privacy, tissue ownership and informed consent in medical sciences during the 1950s. But mostly she talked about Henrietta Lacks.
Henrietta Lacks was born Aug. 1, 1920. Early in 1951, Lacks began to feel abdominal and cervical pains. She was diagnosed with a malignant cervical cancer. She was treated with radiation, which failed to stop the spread of the cancer. It eventually metastasized throughout her body. On Oct. 4, 1951, she died.
Before her death, cell samples from her cervix were removed by her physician and given to George Gey without her or her family’s permission. At the time, permission for cell and tissue harvesting was neither required nor typically sought, especially for such small samples taken during routine procedures. Gey was requesting every cell and tissue sample he could because of his interest in creating an immortalized human cell line — that is, cells that could be indefinitely cultured. Such a creation would have an incredible impact on biomedical research, as it would allow for more standardized and rigorous experiments. After many failed attempts, Gey succeeded in creating this cell line with Lacks’s cancer tissue, still in use today.
The cells Gey created were called “HeLa” cells, after Henrietta Lacks. For many years, several textbooks, journal articles and press reports mistakenly claimed the cells were named for Helen Lane, Helen Larson and Henrietta Lakes. This error was promulgated partly because of initial concerns for privacy and partly through a continuation of earlier inaccuracies. Indifference to the person they came from also played a role.
Skloot first learned about HeLa cells in her community college biology class. She was told the cells were immortal, came from a woman who died of cancer and that she was black. She and many others before her were told these details as if they were all there was to it. After all, what was supposed to matter was that these cells had helped millions, and potentially billions, of people as a result of biological and medical breakthroughs.
That was what was supposed to matter — not the person they were from. That was the story we knew until Skloot came along.
In the half century between the death of Lacks and the beginning of Skloot’s investigation, trillions and trillions of HeLa cells had been grown. For all the good the cells had done for the world (used to test the polio vaccine, develop genetic mapping techniques and understand cancer), very little was known of the woman who brought them into it. After a decade of research, Skloot delivered a book that would tell Lacks’s story and reignite debates in scientific ethics that rage across the nation.
Debate in scientific ethics is rarely simple. Typically the scales of moral justification in science are nuanced with attempts made to carefully calibrate them to balance the severity of pain with the potential for progress. It’s not easy and has been constantly refined as more evidence comes in. But for science to be self-correcting, it must periodically be wrong. And sometimes it is.
One such instance that Skloot elaborates upon throughout her book is the infamous “Tuskegee syphilis experiment” that spanned from 1932 to 1972 in which nearly 600 black men in Alabama were monitored to track the progression of syphilis in natural environments. Those that had syphilis (399 of the original participants) were never told they had the disease and were actively prevented from getting treatment. As a result men, women and children needlessly suffered and died as sacrifices at the altar of ethically disgraced science.
Too often we forget that science is just another thing people do. We forget that scientists are people, no different than others, with families, friends, hobbies and grudges. Their job puts them in a unique position of trust, and this must not be abused. After all, scientists are people and so are their patients. We must all communicate with one another honestly and openly as we go through this life — it’s the only way we’ll make it.
The stories of science are the stories of humanity’s place in the universe. But this only matters insofar as we remember that it is human beings for which and about whom these stories are told.