The Journey of Henrietta Lacks, the Unlikely Pioneer of Modern Medicine

Update (August 2, 2023): The Lacks family reached a settlement in their lawsuit against Thermo Fisher Scientific, a biotechnology company, for profiting from the HeLa cell line without compensating the heirs of Henrietta Lacks. The exact amount of the settlement remains undisclosed. Additionally, in 2013, the family had secured an agreement with the National Institutes of Health to gain some control over access to the HeLa cells’ DNA. Outside the court where the recent settlement was announced, Lacks’s grandson Alfred Lacks Carter, Jr., shared with the AP, “It was a long fight—over 70 years—and Henrietta Lacks gets her day.”

On February 8, 1951, a surgeon at Johns Hopkins Hospital in Baltimore, Maryland, removed a sample of cancerous tissue from the cervix of a 30-year-old woman. She had consented to a procedure involving the insertion of radium into her cervix to treat her cancer, but the full details had not been explained to her. No one could have anticipated that Henrietta Lacks, a Black woman with just a sixth-grade education and five children, would become a cornerstone of modern medicine.

Born as Loretta Pleasant on August 1, 1920, in Roanoke, Virginia, Henrietta's name was later changed to Henrietta. After her mother's passing in 1924, Henrietta moved to Clover, Virginia, where she lived with her grandfather, Tommy Lacks. Her cousin, David “Day” Lacks, also resided in the same household.

Seventeen years later, after having two children together, Henrietta and Day wed and relocated near Baltimore so that Day could take a job at Bethlehem Steel, while Henrietta focused on raising their growing family. She was warm-hearted, fun-loving, and beautiful, standing only 5 feet tall, but she carried herself with great style, both in her appearance and her walk.

Endless Cells

However, on January 29, 1951, just four months after giving birth to her fifth child, Henrietta was forced to visit the dreaded hospital. Many Black residents of the Baltimore area were wary of Johns Hopkins, as it was a segregated institution where they feared receiving subpar care and becoming subjects of medical experimentation. Rumors abounded that Black women were routinely subjected to hysterectomies for any form of abdominal or pelvic pain. Henrietta, who rarely complained, could no longer ignore the painful 'knot on her womb,' according to Rebecca Skloot's 2010 book The Immortal Life of Henrietta Lacks.

The tissue removed from her cervix ten days later was handed over to Dr. George Gey, head of tissue culture research at Johns Hopkins. He believed that if he could identify a line of malignant human cells that continuously divided from the same sample, it could lead to understanding cancer and potentially finding a cure. His assistant placed small portions of the tissue into test tubes, labeling each one with the first two letters of the donor's first and last names: HeLa.

Before long, Henrietta's cells began to multiply. Unlike the other cells they had collected, these cells refused to die. Dr. Gey began sharing these immortal cells with his colleagues, referring to the donor as Helen Lane.

Within just two years, HeLa cells were mass-produced, commercialized, and distributed globally, becoming crucial to the development of vaccines and many medical breakthroughs. By 2017, HeLa cells had been studied in 142 countries and contributed to research that resulted in two Nobel Prizes, 17,000 patents, and 110,000 scientific papers, cementing Henrietta's legacy as the mother of modern medicine.

Henrietta passed away on October 4, 1951. Neither Henrietta nor her husband, Day, were told that her cells were still alive. No one had shared the extensive hopes and ambitions surrounding HeLa cells, nor did anyone ask for permission to take or use them.

HeLa Exposed

In 1971, an article published in the journal Obstetrics & Gynecology revisited the origins of HeLa cells, revealing that cervical adenocarcinoma had caused the death of their donor, Henrietta Lacks. Her identity was now publicly known.

Two years later, during a casual conversation, Henrietta's family discovered the existence of her cells. The Lacks family was stunned: Henrietta was living on through her immortal cells.

Then, a Rolling Stone article stirred up the scientific community by revealing that the woman behind the HeLa cells was Black. The Lacks family was once again taken by surprise. The article exposed how substantial profits were being made from the cells, while Henrietta’s family struggled to afford basic medical care, and her body lay in an unmarked grave.

More stories emerged about Henrietta's cells. Her medical records were laid bare in a 1986 book titled A Conspiracy of Cells: One Woman’s Immortal Legacy and The Medical Scandal It Caused. Medical professionals went on to collect blood samples from her children. The BBC produced a movie, The Way of All Flesh. As Skloot details, a fraudster even claimed he could secure money for the family from Johns Hopkins.

Over the years, the Lacks family's main focus has been to understand the significance of Henrietta's immortal cells. Despite the billions of dollars generated by her cells for biotech companies, cell banks, and researchers, the family has received none of that wealth. However, they find solace knowing that through the Henrietta Lacks Foundation, established by Skloot in 2009, Henrietta’s legacy continues to reflect her generous spirit.

The foundation's mission is to 'provide financial aid to individuals and families who have made valuable contributions to scientific research, especially those whose work has been used in research without their consent or knowledge, without receiving personal benefit from it.' Additionally, it offers a means for those who have benefited from these contributions to express their gratitude. To date, the Lacks family and others have been awarded over 50 grants.