Henrietta Lacks and her "immortal" cells have been a fixture in the medical research community for decades: They helped develop the polio vaccine in the 1950s; they traveled to space to see how cells react in zero gravity; they even aided in producing a vaccine and reducing HPV infections—and subsequently instances of cervical cancer—in girls and women.
But Lacks never knew of her contributions to medicine. In fact, her real name was largely unknown to both the medical community and the public until it was leaked in the 1970s, according to a 2010 Smithsonian Magazine interview with Rebecca Skloot, author of the book The Immortal Life of Henrietta Lacks. Even then, Lacks only began to get some of the attention she deserved after Skloot published her book in 2010, and Oprah Winfrey helped executive produce an HBO film in 2017 about Lacks and her family's quest for answers.
Aside from Lacks' cells being one of the most important tools in modern medicine, her story is important for another reason: It's a glaring example of racism—albeit more covert than outwardly prejudiced acts—in medicine overall. In her 2010 interview Skloot said Lacks' story is a prime example of the need to remember that there are human beings behind important discoveries, and that they deserve recognition and respect. Here's what you need to know about Lacks, her cells, and her family's story.
Who was Henrietta Lacks?
Lacks was a Black woman, a mother of five children, and a tobacco farmer in southern Virginia. In 1951, at 30 years old, she visited Johns Hopkins Hospital in Baltimore, Maryland with vaginal bleeding, according to Johns Hopkins Medicine. She was examined by a gynecologist who discovered a malignant tumor on her cervix and diagnosed her with cervical cancer. Lacks died from the disease 10 months later at 31 years old, and was buried in an umarked grave.
During her time at Johns Hopkins, Lacks underwent radium treatments for her cancer (an option that is no longer used), but that's not all: While Lacks was there, a doctor took a piece of her tumor without telling her, which was then sent to the lab of Dr. George Gey, a cancer and virus researcher also at Johns Hopkins. The reason? Dr. Gey and his fellow scientists had been attempting to grow tissues in culture for years with samples from various patients, but once out of the body, the cells Dr. Gey worked with quickly died in his lab—that is, until Lacks' cells came along. No one knows why, but Lacks's cells never died—instead, they grew indefinitely, doubling every 20-24 hours, and were dubbed "immortal."
From there, Lacks's cells—dubbed HeLa cells by scientists to disguise their origin—became the first cells to grow outside of the human body in culture, and would go on to become the "most prolific and widely used human cell line in biology," according to The New York Times; all of this was without Lacks's family's informed consent. In fact, the world only came to know about her contribution to medicine in the 1971, after Dr. Gey's colleagues published an article in a medical journal with Lacks's name in it—and two years later, per the Times, Lacks's own family learned of her contributions after one of Lacks's daughters-in-law had dinner with a friend whose husband was a cancer researcher.
How did Henrietta Lacks’s HeLa cells contribute to medicine?
Because HeLa cells could be grown continuously in labs, researchers started to rely heavily on them for their experiments, according to the National Institutes of Health (NIH). HeLa cells became the go-to human cell line for scientists working laboratories. By now, it's no longer the only immortalized cell line, but it’s still the most widely used cell line in biomedical research, showing up in more than 110,000 scientific publications, the NIH says.
HeLa cells have been used to better understand the processes behind cell growth, differentiation, and death, to try to help researchers understand a range of diseases. They’ve also helped serve as the foundation for developing modern vaccines, and been used to develop medical techniques like in vitro fertilization, the NIH says. “HeLa cells even contributed to the HPV vaccine,” Jessica Shepherd, MD, a women’s health expert and ob-gyn in Texas, tells Health. “They helped us understand HPV and its cancer-causing cells. That was incredible as far as what we were able to do.”
Cancer research in general—not just that to understand HPV and cervical cancer—has benefitted from HeLa cells, too. "A tremendous amount of what we know about cancer and cancer biology is directly attributed to the use of Henrietta Lack’s cells,” Nicole C. Woitowich, PhD, associate director of the Center for Reproductive Science and a research assistant professor at Northwestern University, tells Health.
And Lacks’ cells haven’t just been used in research—they’re also used to train scientists. “I can’t tell you the number of scientists I personally know who have worked with Henrietta Lacks’ cells,” Dr. Woitowich says. “She has also contributed to the education and training of thousands of scientists in this country. That’s often overlooked.”
What does Henrietta Lacks’s story say about racism in medicine?
While Lacks's HeLa cells have had a major impact on modern medicine, there's still a lot of controversy over their use—namely that Lacks's cells were both taken and further used without her consent or that of her family's. But Lacks and her family aren't the only ones who have suffered this treatment. "This is what you’ll see when you look at the history of the medical community,” Dr. Shepherd says. “She’s not the only case of people’s cells and bodies being used without their consent.”
Dr. Shepherd specifically points to the US Public Health Service Syphilis Study at Tuskagee, in which 600 Black men—299 who had syphilis and 201 who did not— were told they were being treated for having “bad blood.” The study went on for 40 years, and the men with syphilis were never given proper treatment for their disease, even when it became widely available. Overall, "there were many experimental uses of people’s cells and diseases that were studied in African Americans that they were never told what it was used for,” Dr. Shepherd says. "It’s a moral issue as far as how we do studies and how we advance in science and medicine.”
Further, Dr. Shepherd says it’s not a coincidence that Lacks, too, was a Black woman. “People need to understand that racism is not just an outward expression of someone’s hate for another person based on their color,” Dr. Shepherd says. “It is how it affects the infrastructure of the U.S., and that invades into healthcare. This is a side of racism that people need to understand—whether it’s mistreatment of a patient because of their color or lack of healthcare resources and access to a patient because of their color. This is a public health issue.”
As for the use of Lacks’ cells without her permission and knowledge, and that of her family, “this is seen as one of the most egregious abuses of the biomedical research community,” Dr. Woitowich says. “Her cells were widely shared and then became commercialized and are still sold to date. I can go online now and purchase her cells,” she adds—all without any ownership by or financial compensation for Lacks's family.
What’s going on with Henrietta Lacks’s HeLa cells now?
In 2013, a team of German scientists sequenced the genome of a HeLa cell line and published the data which, the NIH points out, had the potential to reveal private information about Lacks’s descendants, including their risks of different diseases. The Lacks family, along with scientists and bioethicists, protested against that information being released, and the sequence was removed from the public domain. Later that year, the NIH reached an agreement with Lacks’ descendants that allowed biomedical researchers controlled access to the whole genome data of HeLa cells, as long as the Lacks family was able to first review applications for the use of the data. That agreement, however, did not include any sort of financial compensation.
"The HeLa genome is another chapter to the never ending story of our Henrietta Lacks,” Henrietta’s granddaughter Jeri Lacks Whye, said in a press release in 2013. “She is a phenomenal woman who continues to amaze the world. The Lacks family is honored to be part of an important agreement that we believe will be beneficial to everyone.” The NIH has also set up a section on its website that is a “transparent, accessible resource” to help people understand Lacks’ story and what HeLa cells have achieved.
Most recently, in 2018, a lawyer for the Lacks family—specifically Lacks's son, Lawrence Lacks, and her two grandsons—announced that she planned to file a petition in July of that year seeking guardianship of Lacks's cells for her family, according to the Washington Post. Christina J. Bostick, the lawyer representing the Lacks family, told the Post no one had complete ownership of the cells at that time. "I think the answer is no one legally owns the cells as one whole entity," she said, noting that, because the cells can be purchased in an open market, ownership belongs to the purchaser of the cells they acquire. No further information is available on the outcome of that petition, but Bostick told the Post that, her overall goal was to both obtain guardianship of the cells, and for family members to be compensated from further profits the cells generate.
As it stands, despite Henrietta Lacks now being a public name, many in the medical community still think she and her family haven't been recognized enough for her contributions to science. "The commercialization of this family is an issue,” says Dr. Woitowich. “I don’t see why we can’t stop using HeLa cells. There are enough alternatives today that, quite frankly, we need to consider if it is ethical to keep using HeLa cells.” Ultimately, Dr. Woitowich says it’s important for the medical community to recognize how bad it was to take and use Lacks’ cells without her consent. “We have to do better. This can’t be set as the standard,” she says. “We have to, as a community, acknowledge that we did do this and it was wrong.”
To get our top stories delivered to your inbox, sign up for the Healthy Living newsletter.