The Story of Henrietta Lacks and Her 'Immortal' Cells

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 the COVID-19 vaccine. The cells also led to the discovery of how human papillomavirus (HPV) can lead to certain types of cervical cancer.

But Lacks never knew of her contributions to medicine. In fact, her real name was largely unknown to the medical community and the public until it was leaked in the 1970s.

Lacks only began getting recognition after author Rebecca Skloot published The Immortal Life of Henrietta Lacks in 2010. Oprah Winfrey helped executive produce an HBO film—also titled The Immortal Life of Henrietta Lacks—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.

Here's what you should 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. 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 eight months later at 31 years old and was buried in an unmarked grave.

While Lacks was receiving treatment, 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 at Johns Hopkins.

Why Were Her Cells Taken?

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' cells never died. Instead, they grew indefinitely, doubling within 24 hours, and were dubbed "immortal."

From there, Lacks' cells—called HeLa cells by scientists to disguise their origin—became the first cells to grow outside of the human body in culture. They would go on to become the "most prolific and widely used human cell line in biology," according to The New York Times.

When Was Her Name Released?

All of this was done without Lacks' family's informed consent. The world only learned about her contribution to medicine in 1971—20 years after her death—after Dr. Gey's colleagues published an article in a medical journal with Lacks' name.

Two years later, Lacks' family learned of her contributions after one of Lacks' daughters-in-law had dinner with a friend whose husband was a cancer researcher.

How Did Henrietta Lacks' Cells Contribute to Medicine?

Because HeLa cells could be grown continuously in labs, researchers started to rely heavily on them for their experiments. HeLa cells became the go-to human cell line for scientists working in laboratories.

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.

HeLa cells have been used to better understand the processes behind cell growth, differentiation, and death, to help researchers understand various diseases. They've also helped serve as the foundation for developing modern vaccines and have been used to develop medical techniques like in vitro fertilization.

HPV Research

HeLa cells were a major contribution to the development of the HPV vaccine. They led to the discovery that HPV can lead to types of cervical cancer which allowed scientists to develop one of the first anti-cancer vaccines.

Cancer Research

Cancer research in general—not just that to understand HPV and cervical cancer—has benefitted from HeLa cells, too.

For instance, a drug called camptothecin slowed down cancer cell growth when it was used on HeLa cells. Camptothecin was approved for treating ovarian, lung, and cervical cancer.

"A tremendous amount of what we know about cancer and cancer biology is directly attributed to the use of Henrietta Lacks' cells," Nicole C. Woitowich, Ph.D., chair of the American Society for Biochemistry and Molecular Biology Science Outreach and Communication Committee, told Health.

Training Scientists

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," said Woitowich. "She has also contributed to the education and training of thousands of scientists in this country. That's often overlooked."

What Does Henrietta Lacks' Story Say About Racism in Medicine?

While Lacks' HeLa cells have had a significant impact on modern medicine, there's still a lot of controversy over their use—namely that Lacks' cells were both taken and further used without her consent or that of her family's.

"People need to understand that racism is not just an outward expression of someone's hate for another person based on their race," Jessica Shepherd, MD, a women's health expert and ob-gyn, told Health. "It is how it affects the infrastructure of the US, and that invades into health care."

For example, institutional racism in health care leads to disparities, affecting everything from the availability to the timeliness of patient care.

"This is a side of racism that people need to understand—whether it's mistreatment of a patient because of their race or lack of healthcare resources and access to a patient because of their race. This is a public health issue," added Dr. Shepherd.

As for using Lacks' cells without her or her family's permission and knowledge, "this is seen as one of the most egregious abuses of the biomedical research community," said Woitowich. "Her cells were widely shared and then became commercialized and are still sold to date. I can go online now and purchase her cells," said Woitowich—all without any ownership by or financial compensation for Lacks' family.

Are There Stories That Are Similar to Lacks'?

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," said Dr. Shepherd. "She's not the only case of people's cells and bodies being used without their consent."

Dr. Shepherd specifically pointed to the U.S. Public Health Service Syphilis Study in Tuskegee, Alabama, in which 600 Black men—399 who had syphilis and 201 who did not—were told they were being treated for having "bad blood." The study continued 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," said Dr. Shepherd. "It's a moral issue as far as how we do studies and how we advance in science and medicine."

How Did the Lacks Family Respond?

In 2013, a team of German scientists sequenced the genome of a HeLa cell line and published the data which had the potential to reveal private information about Lacks' 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.

Does The Lacks Family Have Ownership of Her Cells?

In 2018, a lawyer for the Lacks family—specifically Lacks' son, Lawrence Lacks, and her two grandsons—announced that he planned to file a petition in July of that year seeking guardianship of Lacks' cells for her family.

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," said Bostick, 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 both to obtain guardianship of the cells and to have family members compensated from further profits the cells generate.

Did Henrietta Lacks Get the Recognition She Deserves?

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," said 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, Woitowich said 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," said Woitowich. "We have to, as a community, acknowledge that we did do this, and it was wrong."

A Quick Review

Henrietta Lacks was a Black woman diagnosed with cervical cancer. She died in 1951. Cells from her tumors were taken without her consent and used for groundbreaking medical research that led to a multitude of scientific developments.

While her cells went on to become pivotal in medicine, there's no denying that it was wrong for Henrietta Lacks' cells to be taken and used without her consent. Lacks' story illustrates just one example of how pervasive racism can be in medicine, but the status quo seems to be changing.