The Humanity and Legacy of Henrietta Lacks

Written by Becca Williams, SBT Copywriter

 Cover art from this article.

In 1951, a Black woman named Henrietta Lacks entered Johns Hopkins hospital in Baltimore, Maryland.  She knew there was a lump on her cervix that wasn’t supposed to be there, and had gone to another hospital to get some tests done.  That hospital tested her for syphilis, which came back negative, and then, because they wouldn’t treat Black patients, referred her to the segregated Johns Hopkins hospital.  White doctors took tissue samples from her cervix without her consent, placed them under a microscope and discovered that her cells could live outside her body, replicating indefinitely.  This became one of the most significant scientific breakthroughs of the 20^th Century, paving the way for this immortal cell line to assist with everything from detecting radiation in bombs, to the polio vaccine, and in-vitro fertilization (here’s a fuller list).  Because of their ability to replicate outside the body, scientists can conduct experiments and testing on identical cells without placing humans at risk. There is really no way to overstate the impact these cells have had on nearly every aspect of science and our lives.  

I have long wanted to write about Henrietta Lacks and HeLa cells, the name of her immortal cell line, taken from the first two letters of her first and last name.  I touched briefly on Henrietta’s legacy in the blog I wrote about assisted reproductive technologies, where we learned that the cells used to first discover and trial various IVF processes were HeLa cells.  This, in conjunction with the blog about eugenics and Mississippi Appendectomies, underscores how important it is for us to understand the history, mistreatment, and lack of consent given when it comes to White Supremacy’s utilization of Black women’s bodies for its own benefit.  This all comes down to a lack of humanity, how we view other people as a way to further our own cause, and not as embodying a depth of emotion, love, lived experience, and knowledge that are precious and valuable in and of itself.  The callousness of these stories extends beyond the cold-heartedness of the doctors involved – the doctors who stole parts of Henrietta’s body without her knowledge and then continued to profit from it, the doctors who forcibly removed organs from Black women and girls as a way to preserve the “sanctity” of whiteness and, ultimately to protect it from Blackness.  For us to understand this, we must understand how we rely on it, benefit from it, and it saves many of our lives.  

(The Lacks family with a statue of Henrietta in the Royal Fort Gardens, 2021.)

There’s a certain rote storytelling when it comes to talking about Henrietta Lacks that I’ve been trying to sort through as I research and write about this.  Rebecca Skloot, a white science writer, wrote the book “The Immortal Life of Henrietta Lacks” in 2010, after spending months investigating and learning about Henrietta’s life through her surviving family, namely her children.  The book also looks into medical racism and the ways in which Johns Hopkins and other large medical and science institutions have reaped financial and reputational gains spanning decades from the use of Henrietta’s cells, while her immediate family has seen no compensation for their mother’s involuntary cell “donation.”  That book, recently made into an HBO film starring Oprah Winfrey, brought the mystery of HeLa cells into the public domain, and Rebecca Skloot started the Henrietta Lacks Foundation as a way to provide reparations for “individuals who have made important contributions to scientific research without personally benefitting from those contributions, particularly those used in research without their knowledge or consent.” I believe this is all helpful in terms of broadening our understanding of medical racism, informed consent, and the ways in which our society has benefitted from this type of research.  What I struggle with is the lack acknowledgement of whiteness and accountability.  Without Skloot’s work, much of this would perhaps remain unknown, and it’s worth examining why it takes the work of a white woman with access to resources for us to pay attention to something this egregious.  What do we then do after being armed with this information?  How can we hold ourselves and these larger institutions accountable as a way to ensure patient consent is front and center?  And, how do we grapple with our dark history of extracting labor, research, wealth, and power from Black bodies?  While it’s very important for us to know about Henrietta’s life and the contributions her cells have made to science (and our everyday lives), White Supremacy dictates that we let the story end there without considering how this cycle propagates and replicates, and what our individual role is in ending it.  I invite you to take the time to watch the HBO film or read Skloot’s book (which is where a lot of the following information comes from), while also thinking about how integral patient consent and bodily autonomy are to you.  If you have the means, please donate to the Henrietta Lacks Foundation or find an organization or advocacy opportunity more local to you to get involved with.

Henrietta Lacks was born in 1920 in Roanoke, Virginia. When she was ten years old, her recently widowed father took her and her 9 siblings to Clover, Virginia where Henrietta was raised by her grandfather.  Henrietta spent her childhood working in her grandfather’s tobacco fields and attending school, a 4-mile roundtrip walk.  She was kind, generous, lively, and an amazing chef who often cooked meals large enough to share with any family who happened to be around.  At the age of 31, Henrietta noticed that lump on her cervix and went into Johns Hopkins for a biopsy.  It was common practice then for doctors to remove cell and tissue samples from patients without their consent in this quest to find an infinitely reproducing cell line, in addition to attempting other scientific research and experiments.  There’s a lot about this story that’s striking, but one of the things I found really unnerving was that the doctors involved in her care noticed the immortal characteristics of her cells after that first biopsy and began reproducing and sending samples of her cells all across the world while Henrietta was still alive.  Numerous laboratories were built to account for the massive demand for this cell line, and a company called Microbiological Associates began selling her cells to anyone who would buy them.  Henrietta didn’t survive much longer after that initial biopsy, and when she passed away, doctors once again took cells and tissues from her body for their own profit.  Some researchers knew about the origin of these cells, however for a long time the doctors and researchers involved did not share Henrietta’s true identity, claiming instead that her name was “Helen L”, leading many to believe that they were aware of how shady their nonconsensual tissue collection techniques were.  

Henrietta’s family was kept in the dark for decades.  At one point in time, her immediate family was called in to have their blood drawn so that doctors could perform genetic sequencing in order to determine the extent to which HeLa cells had potentially expanded and contaminated other immortal cell lines.  Note that this is a highly complex scientific topic, and I’m not a scientist.  However, since the inception of HeLa cells researchers have been able to create additional immortal cell lines while still using hers for various studies. The doctors involved in drawing her family’s blood did not say what their real intention was, instead telling the family that they were needing to run tests to ensure that those family members did not have the same type of cancer as Henrietta.  The family still was unsure as to why, all these years after her death, doctors were still interested in learning more.  It wasn’t until the 1970s when Henrietta’s daughter-in-law, Bobbette Lacks, had a chance encounter with a friend who worked at the National Cancer Institute and who noticed Bobbette and Henrietta shared the same last name, eventually divulging that they had been working with her mother-in-law’s cells.  This led the Lacks family to begin to unveil where and for what Henrietta’s cells had been used.  It came to light that doctors did not think the Lacks family was capable enough to fully grasp the science and meaning behind Henrietta’s cells, further underscoring the ways in which racism seeps throughout this whole saga. 

In learning about the Lacks family, it becomes evident that much of their lives unwound as the result of Henrietta’s early death, which flung her children into abusive living situations.  Learning about her mother’s role in thousands of scientific discoveries cast a long shadow onto their grief as they continued to be in pain over their loss while simultaneously knowing that biomedical companies were profiting handsomely from something that didn’t belong to them. In 2013, the National Institutes of Health formally acknowledged Henrietta’s contribution to science, however no attempt at compensation was made.  Johns Hopkins has claimed that they don’t owe the family money since they technically didn’t profit from her cells, and in 2020, a major biomedical research organization donated a “six-figure” gift to the Henrietta Lacks Foundation as a form of reparations.  This same bio-medical company has raked in billions of dollars in profit, much of which stemmed from experiments and studies run with Henrietta’s cells.  Meaning, a six-figure donation doesn’t do much to compensate.  While it may be hard for us to ascertain what type of compensation or recognition would suffice, the Lacks family has some ideas and in October of 2021 they sued a biotech company for the non-consensual use of her cells.  The case is still pending. 

I encourage you to take some time during this upcoming holiday to learn more about Henrietta Lacks and the quest for justice and reparations.  Think about how something like this would impact you and your loved ones, and engage in a few conversations about how Black bodies continue to play a deeply flawed role in our society in ways seen and unseen, and in industries spanning the large spectrum of our existence.  And while the wrongdoings of the biomedical industry may not be on your mind every day, this issue serves as a reminder of the consequences of viewing others as less than human.