You may think it odd that I’m about to give you a Woman Crush Wednesday episode on someone who’s had a best-selling book written about her, a highway in Maryland named after her, who is the subject of academic conferences and articles, who’s had a high school named in her honor, and has a small planet that bears her name. And perhaps most notable of all, in our media-obsessed age, a 2017 Oprah Winfrey film made about her story.
After all, these Woman Crush Wednesday shows are usually about women from history who should be better known, whose lives and contributions to society deserve more attention. Well, even though her story is well known, until very recently, I didn’t know it. And I’m going to tell you a very brief version of the story of Henrietta Lacks in this episode.
Born in rural Virginia in August 1920, Henrietta Pleasant grew in a tobacco farming family, and lived a fairly typical life for that time and place. She married David Lacks and eventually had five children with him. They moved to Maryland in 1941 because David Lacks got a job at Bethlehem Steel (which was cranking up its war production). After a difficult pregnancy, the birth of her fifth child in late 1950 seemed to bring on problems, including severe hemorrhaging. She was taken to Johns Hopkins, and was found to have malignant cancer of the cervix. The biopsies taken of the cancerous mass were sent for testing and analysis, while she was given radium tube inserts in an attempt to kill the cancer. Despite further treatments, Henrietta died on August 8, 1951. The cervical cancer had spread throughout her body.
During her hospital stays, two samples of tissue (one healthy, one cancerous) were taken from the area near her cervical cancer. They were taken without her knowledge or permission, which was in line with contemporary practice at the time. It turned out that the cells from her cancerous tissue were unlike other cells studied at Johns Hopkins. Usually, these cells died quickly, even in controlled laboratory conditions. Her cells did not die. In fact, they doubled more or less every day.
Henrietta Lacks cells became the first (and, for a long time, the only) “immortal” cell line to be studied and used by medical researchers. What became known as the HeLa line (for the HE in Henrietta and the LA in Lacks) have been used to study the human genome, to gauge the effects of cancer treatments without having to experiment on people, to study the effects of radiation, for leukemia research, in the development of the polio vaccine, and even the effects of zero gravity in outer space.
Apart from the tragedy of Henrietta Lacks’ death, all this sounds like an uplifting story. A woman’s sad death at a young age has allowed for great medical advances, and has saved many lives. And in many ways, it is uplifting. But, like almost all stories, it’s much more complicated than that. The Lacks family, including her children, did not know about the use of her cells until well into the 1970s. Researchers trying to find out more about the genetic background to the HeLa cell line began contacting her relatives (more or less out of the blue — calling them on the phone, for instance). They were often asked for blood samples. As you can imagine, this must have sounded very strange and suspicious to them. For the next twenty or so years, the Lacks family tried to find out what was going, and the full story of what had happened to their mother, Henrietta, and her cells. Among other things, they were once taken in by charlatan posing as a lawyer who convinced them they could sue Johns Hopkins and other major medical institutions for millions for invasion of privacy. And perhaps the worst incident was when her medical records were released without their consent in the mid-1980s.
It was only in the late 1990s and early 2000s that the family was able to come to legal agreements with Johns Hopkins and other major medical institutions about how these questions should be settled. Rebecca Skloot’s excellent book, The Immortal Life of Henrietta Lacks, explains all this very well, and, of course, is on the Buzzkill Bookshelf. The struggles over questions of rights of privacy and medical consent were immense and complex, and I think the full story doesn’t show our culture and society at its best. Most responsible scientific institutions, such as Johns Hopkins, never profited from their use of the HeLa cell line, but others did. In a 1990 case similar to the Lacks one, however, the California Supreme Court ruled that a person does not own their “discarded” cells and tissues, and that those cells and tissues can be commercialized.
Attempts at addressing the privacy concerns raised by the Henrietta Lacks case have been wide-ranging, but have mostly resulted in intellectual debates and discussions about the nature of privacy and ownership of the human body. There have been medical conferences, memorial lecture series, honorary doctorates named after her, and a portrait of her jointly commissioned by the National Portrait Gallery and the National Museum of African-American History and Culture. And, perhaps most significantly, the Henrietta Lacks Foundation was established. Its mission is to “help individuals who have made important contributions to scientific research without personally benefiting from those contributions, particularly those used in research without their knowledge or consent.”
Henrietta Lacks certainly never knew what her life would mean to the future of science and medicine, and it is certainly far beyond my philosophical abilities to try to assess what the HeLa cell line (and how it was obtained) means for questions of personhood and identity. But I have been struck very forcefully by the Lacks family’s ultimate response to everything that happened with Henrietta’s cells. After decades of disquiet, and distrust of medical authorities and others involved in the case, they said this about the HeLa cells:
“We think they’re incredible, and they’ve done wonderful things and that makes us happy. We’ve very glad that her cells are out there and being used in the way they are. We wish it didn’t happen the way that it did. We wish they would have explained things to us when we asked, we wished they hadn’t released her medical records. We wish they’d told us, we wish they’d asked, because we would have said yes. ”
They would have said yes.
If you can, please contribute to the Henrietta Lacks Foundation. Go to henriettalacksfoundation.org/donate and give what you can.
The Immortal Life of Henrietta Lacks. (2011)
by Rebecca Skloot
Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor black tobacco farmer whose cells—taken without her knowledge in 1951—became one of the most important tools in medicine, vital for developing the polio vaccine, cloning, gene mapping, and more. Henrietta’s cells have been bought and sold by the billions, yet she remains virtually unknown, and her family can’t afford health insurance. This phenomenal New York Times bestseller tells a riveting story of the collision between ethics, race, and medicine; of scientific discovery and faith healing; and of a daughter consumed with questions about the mother she never knew.