Thursday, August 03, 2023

Henrietta Lacks' family settles with biotech company that used her cells. Here's why her story is so important.


Rachel Grumman Bender
Updated Tue, August 1, 2023 

During a biopsy in 1950, Henrietta Lacks' tissue was removed and used in medical research without her knowledge or consent. She died of cervical cancer in 1951.
 (Photo: Getty Images)

On Tuesday, Henrietta Lacks’ family settled their lawsuit with biotechnology company Thermo Fisher Scientific, which reportedly profited from the use of Lacks’ cells in biomedical research. The cells were taken without permission during a biopsy more than 70 years ago. (The terms of the agreement were not disclosed.)

Lacks’ story gained national attention after Rebecca Skloots’ bestseller, The Immortal Life of Henrietta Lacks, came out in 2010. Lacks’ cells — known as the HeLa cell line (named after Lacks) — have played an incredibly important role in medical research, leading to numerous scientific breakthroughs. But her family has argued for years that the cells were obtained unethically, and they haven’t “seen a dime” despite “staggering profits” from biotechnology companies such as Thermo Fisher Scientific “using the HeLa line.”

So who was Henrietta Lacks? And why is her story and the settlement important? Here’s what you need to know.

Who was Henrietta Lacks?

Lacks was a young Black mom with five children who lived in Baltimore. She died of an aggressive cervical cancer in 1951 at just 31 years old. Before her death, she sought treatment for vaginal bleeding at Johns Hopkins Hospital in 1950. A gynecologist found a large, malignant tumor on her cervix and began treating her with radium, according to Johns Hopkins Medicine. While receiving treatment, samples of tissue from Lacks’ cervix were taken without her knowledge or consent during a biopsy and were given to a research team — a practice that was not unusual at the time.

In the lab, the researchers discovered that Lacks’ cells were remarkably unique. According to Johns Hopkins, while other cell samples would die, Lacks’ cells “doubled every 20 to 24 hours.” Because of this, they were considered the first “immortal” cell line, allowing scientists to cultivate her cells and use them in biomedical research. HeLa cells are the oldest and most widely used human cell line.

Johns Hopkins Medicine has said they "never sold or profited from the discovery or distribution of HeLa cells" and do not own the rights to the HeLa cell line. Rather, HeLa cells are offered freely and widely for scientific research.

Despite the fact that Lacks’ cells were a crucial part of a multi-billion dollar biotech industry, her family, who have struggled financially, had never received any compensation in the past.

Although Johns Hopkins said they didn’t profit from the HeLa cell line, they did admit that they “could have — and should have — done more to inform and work with members of Henrietta Lacks’ family out of respect for them, their privacy and their personal interests.” They added that, even though collecting and using Lacks’ cells in research was “an acceptable and legal practice in the 1950s, such a practice would not happen today without the patient’s consent.”

Why it matters

Women’s health expert and author Dr. Jennifer Wider tells Yahoo Life that it’s “very important for people to recognize the impact that Henrietta Lacks had on modern medical advancements,” pointing out that Lacks' cells are “directly responsible for many medical discoveries in biomedical research including the polio vaccine” and medications to treat HIV, as well as “cancer treatments and gene sequencing.”

According to the National Institutes of Health: “HeLa cells have served as a standard for understanding many fundamental biological processes, such as testing the polio vaccine, establishing basic techniques for cloning and in vitro fertilization" and "advancing the development of anti-cancer drugs.”

Along with being used to develop COVID-19 vaccines, Lacks' own cell line helped identify that HPV can lead to certain types of cervical cancer — the disease that ultimately took her life.

Despite these medical advances, Lacks’ story also serves as a reminder of why medical consent is crucial. “The story of Henrietta Lacks not only underscores the importance of patient consent, it highlights other ethical principles in medicine, including the right to privacy and proper communication between donors and researchers,” says Wider.

Additionally, her story illustrates how some patients, particularly patients of color, have been exploited. According to the Associated Press, the suit stated that “the exploitation of Henrietta Lacks represents the unfortunately common struggle experienced by Black people throughout history. Indeed, Black suffering has fueled innumerable medical progress and profit, without just compensation or recognition.”

Although statements released from both the Lacks’ estate and Thermo Fisher said that the parties are “pleased” with the settlement, Wider says that, in her opinion, “a financial settlement does not fully right the wrong that was committed against Ms. Lacks. All patients should have their rights respected and protected. But a settlement in favor of Henrietta Lacks' family is an acknowledgment” that biomedical companies had and have “an ethical obligation to inform and work directly with the Lacks family in the past, present and future.”

Civil rights attorney Ben Crump, who represents Lacks’ family, said on Tuesday that the lawsuit also served to raise awareness of Lacks’ invaluable contributions to medicine. Crump stated that it’s “an injustice” that “everybody in America doesn’t know who Henrietta Lacks is,” adding: “And that’s why we’re fighting. Because Black history is American history. Henrietta Lacks is American history.”

Senator Chris Van Hollen agrees that Lacks' contributions to medicine should be recognized. “Henrietta Lacks changed the course of modern medicine," he said in a recent statement. "It is long past time that we recognize her life-saving contributions to the world."

Additional reporting by Tayler Adigun

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