If you’re a scientist involved in biology, you have likely heard about the HeLa cells. But do you know the tragic story behind them?
Background
In 1951, Henrietta Lacks, a 31-year-old African-American woman, sought treatment at Johns Hopkins Hospital in Baltimore for a cervical mass. She noticed the mass after her last pregnancy and went to Johns Hopkins as it was one of the few hospitals that treated African-Americans at the time.
Yup, 1951 was not a good time to be black. Or lower class. Or a woman. Damn, aren’t we glad that it’s not the case anymore ?
A biopsy of the mass was made, and was diagnosed as a malignant epidermoid carcinoma. However, it was later confirmed to be adenocarcinoma instead ; cervical cancer caused by the human papillomavirus (HPV). Lacks died a few weeks after, the cancer having spread too far.
During the treatment, her doctor, Howard H. Jones, took it upon himself to take samples from Henrietta’s malignant mass, without her permission or knowledge. This sample was given to a cancer researcher at the hospital, George Otto Gey.
The cells from this sample turned out to be an immortal cell line and are nowadays widely known as the HeLa (Henrietta Lacks) cells, one of the most used cell lines in biomedical research.
The First Immortal Cell Line
What made Henrietta’s cells so special was their ability to divide themselves multiple times without dying (hence the term “immortal”). At the time, all cultured cells died in culture after a few days, which made testing extremely difficult.
Although it is not absolutely clear what made HeLa cells so exceptional, we can make a few guesses:
- HeLa cells have 76 to 80 chromosomes, compared to the 46 of a normal human cell
- The cells grow faster than other cancer cells and can overtake them.
- They can divide an infinite number of times. Their telomeres regrow after each division, opposed to the decreasing of telomeres in a normal cell’s division cycle
Controversy n°1
As stated before, the first samples of HeLa cells were taken without Henrietta’s permission. But that’s not even the worst part: when George Otto Gey noticed the exceptional properties of HeLa cells, he sent his assistant to take further samples from Henrietta’s body in the morgue after her death (without her family’s permission, obviously-I mean, she’s already dead right?).
From those samples, the immortal cell line was started.
Impact
The first immortal cell line changed everything in the biomedical research world. Suddenly, scientists could test multiple conditions on the same cell line and have it regrow every time. Once the word spread, the demand was huge. The cells were mass-produced and mailed to every lab around the world.
Some of the breakthroughs were:
- Jonas Salk used HeLa cells to develop the polio vaccine
- Determination of the impact of X-Rays on human cell growth
- Development of a cancer research method to test whether a cell line is cancerous
- Understanding the infectivity of Ebola and HIV
- Sequencing the human genome
- Development of the HPV vaccine
And much more. HeLa cells are involved in almost 11,000 patents and have been described in more than 110,000 scientific publications. Those numbers highlight just how important those cells have been to biomedical research, even 73 years after Henrietta’s death.
Controversy n°2
So, now that the background is set, you’re wondering, “Well, as sad as Henrietta’s death is, at least her family could profit from the situation?”
Spoiler alert: No.
Her family had no idea that all of this was happening until 1975, 23 years after Henrietta’s death… Remember, neither Henrietta nor her family gave permission to harvest the samples.
However, at the time in 1951, permission was sadly not required. The government decided that a person’s discarded tissue and cells were not their property.
Like what do you mean – the thing that you just took out of MY body is not mine?
We can just be glad that it didn’t apply to babies, as it would have been an awkward birthing process.
Bioethics Case
In March 2013, researchers published the DNA sequence of a strain of HeLa cells, which was discovered by the Lacks family through author Rebecca Skloot.
The family expressed concerns about privacy regarding the genetic information available to the public. Jeri Lacks Whye, Henrietta Lacks’ grandchild, emphasized their worries about the potential disclosure of sensitive familial data. In the same year, another group, funded by the National Institutes of Health (NIH), submitted a different HeLa cell line’s genome for publication.
We can understand the Lacks family, I mean your entire family’s genome is available to everyone on the planet (when you NEVER gave permission), you have to feel a tad uncomfortable.
An agreement was reached in August 2013 between the family and the NIH, granting the family some control over access to the cells’ DNA sequence. This agreement also ensured acknowledgment in scientific papers and appointed two family members to a committee regulating access to the sequence data.
Damn, thanks for the minimal effort guys.
In 2021, the Lacks family filed a lawsuit against biotech company Thermo Fisher Scientific. They stated that Thermo Fisher Scientific profited from the HeLa cell line (true) without Lacks’s consent (also true). In 2023, Thermo Fisher offered an unknown sum to the Lacks family as a settlement.
They accepted and did not disclose the amount.
I do hope they made bank and are swimming in cash today.
Recognition
In 1996, Morehouse School of Medicine initiated the HeLa Women’s Health Conference to honor Henrietta Lacks and her contributions to medical research. The conference, led by physician Roland Pattillo, aims to recognize African Americans’ impact on medical research.
Since then, various institutions have honored Lacks’s memory (about damn time).
The Johns Hopkins Institute for Clinical and Translational Research established the Henrietta Lacks Memorial Lecture Series in 2010 and announced plans in 2018 to name a research building after Lacks (I mean, you literally stole her cells that’s the least you can do dude).
In 2020, she was inducted into the National Women’s Hall of Fame. In 2021, the Henrietta Lacks Enhancing Cancer Research Act of 2019 became law, requiring a study on barriers to participation in cancer clinical trials.
The University of Bristol unveiled a statue of Lacks, the first public statue of a black woman created by a black woman in the UK.
In 2021, the World Health Organization awarded Lawrence Lacks, her son, the Director General Award for her contributions to science. In 2022, legislation was filed to posthumously award her the Congressional Gold Medal.
The legacy lives on
We are now in 2024, 73 years after the first harvesting of Henrietta’s cells. And she is as present as ever in pop culture.
Rebecca Skloot, after publishing two articles about this story in 2000, published a book in 2010 titled “The Immortal Life of Henrietta Lacks.” She worked with Henrietta’s daughter and with her first paycheck, funded the Henrietta Lacks Foundation to support the Lacks family.
In 2017, a movie starring Oprah Winfrey as Henrietta and based on Skloot’s book came out. I have not seen it but it’s rated 6.4/10 on IMDb. Make of that what you will.
Henrietta’s story was used in an NBC’s Law & Order episode, explained in the Netflix movie “Project Power” in 2020 (not that good, but you do get to see Jamie Foxx break a few legs, so worth it IMO), and was the subject of many more songs, books, and art.
Conclusion
So, next time you find yourself growing HeLa cells or reading an article about these cells, take a moment to think about Henrietta and how she alone has done more to advance medicine than any other person.
Let’s hope her most lasting legacy will be to raise awareness of the inequities in health provision and research and lead the way to a fairer, more inclusive healthcare system.
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