75 years after Henrietta Lacks’ death, her family is still fighting for a say in her legacy
TheGrio...
Her grandson, Ron Lacks, says the estate remains excluded from some decisions, even as other descendants work with Johns Hopkins on efforts honoring her life.
The family of Henrietta Lacks has spent decades fighting to ensure that her contributions to medicine are properly honored and recognized. Now, 75 years after her death, the conversation around how she is honored, who is involved, and where those efforts stand continues.
On Thursday (Oct. 8), just four days after the anniversary of her death and days before Johns Hopkins is set to host the 16th annual Henrietta Lacks Memorial Lecture, her grandson Ron Lacks called the institution out in posts on Threads.
“Johns Hopkins is holding the Henrietta Lacks Memorial Lecture this Saturday. I asked for a book table. They said no,” he wrote in regards to his book “Henrietta Lacks: The Untold Story.”
“After all these years, the Estate is still not consulted about events held in her name,” he continued. “I am her grandson and the executor of her Estate. What do you all think about that?”
He added, “They are waiting for family members that give a damn to die. They did it with my grandfather. My dad passed away three years ago. I can take this to my grave that I will fight till the end to get justice for Henrietta Lacks. Thank you for your support.”
Attempts to reach Ron and other family members were unsuccessful.
As his posts continue to receive thousands of engagements and hundreds of comments, they have also renewed interest in Lacks’ story and the efforts to honor her contributions to medicine. Here’s a breakdown of who she was, what happened to her, and where her legacy stands 75 years after her death.
Who was Henrietta Lacks?
In 1951, Lacks, a mother of five at the age of 31 living outside of Baltimore, sought treatment at Johns Hopkins Hospital for cervical cancer. During her treatment, however, doctors collected samples of her cancer cells without her knowledge or consent, and researchers soon discovered that, unlike other human cells they’d studied, hers could continue multiplying indefinitely in a laboratory. Dubbed “HeLa” cells, they went on to revolutionize modern medicine, contributing to breakthroughs involving the polio vaccine, cancer treatments, HIV research, and more.
Lacks never knew about her extraordinary contribution to science. She died on October 4, 1951, and her family would not learn about the cells and their widespread use until more than two decades later. By then, HeLa cells had become an invaluable resource in medical research, with biotechnology companies eventually profiting from their use while her descendants received neither reconstruction nor compensation for decades.
“The Immortal Life of Henrietta Lacks“
In 2010, following the release of Rebecca Skloot’s bestselling book, “The Immortal Life of Henrietta Lacks,” which explored her life, the scientific impact of her cells, and her family’s years-long struggle for recognition, her story gained widespread renewed attention. The book was later turned into a 2017 HBO film starring Oprah Winfrey as Lacks’ daughter Deborah, who spent much of her life trying to uncover the truth about her mother’s cells.
As the intrigue in Lacks’ grew, so did the efforts to honor her legacy and address the ethical questions surrounding the use of her cells. Johns Hopkins began hosting an annual memorial lecture in her honor in 2010, while her descendants continued advocating for greater recognition, involvement, and accountability.
However, as Lacks’ story gained more attention, different perspectives emerged within the family regarding how her life and legacy were being portrayed. In 2017, The Washington Post reported that Lacks’ eldest son, Lawrence Lacks, and his son, Ron, expressed concerns about the book and its film adaptation, particularly how their family was represented and their involvement in decisions about her story.
Meanwhile, other descendants, including Lacks’ granddaughter Jeri Lacks Whye, embraced the projects as opportunities to share their grandmother’s story and educate the public about her contributions to medicine. Several family members also served as consultants on the HBO film.
Her family’s fight for justice
Despite the differing perspectives held at times, the family has remained united in seeking accountability. Through her estate, represented by Ron, they have launched lawsuits against pharmaceutical and biotechnology companies accused of profiting from HeLa cells without permission. In 2023, the estate reached its first major settlement with Thermo Fisher Scientific. Then, in February 2026, they reached agreements with the pharmaceutical giant Novartis, and in March 2026 with Viatris. The financial terms of all three agreements mark significant developments in the family’s decades-long pursuit of accountability.
The estate has also pursued a lawsuit against Ultragenyx Pharmaceutical over similar allegations, with litigation continuing into 2026. Notably, Johns Hopkins was not a defendant in these cases and maintains that it never sold or profited from Lacks’ cells.
Where things stand with Lacks’ legacy and Johns Hopkins today
Today, Johns Hopkins continues to work with members of the Lacks’ family to preserve and celebrate Henrietta’s legacy. In 2010, the institution launched its annual Henrietta Lacks Memorial Lecture, which has since become a way to recognize her contributions to medicine and to encourage conversations about medical ethics, research, and health equity. Over the years, Hopkins has also established scholarships in her honor and collaborated with family members on plans for a new research building bearing her name, which they broke ground on in 2024.
Several descendants, including Whye, have publicly supported these efforts and participated in events honoring their grandmother. Multiple members of the family will be at Saturday’s event, theGrio has confirmed.
When reached for comment by theGrio, Kim Hoppe, Vice President of Public Relations at Johns Hopkins Medicine, said, “Johns Hopkins Medicine is honored to work closely with the Lacks family every year on this impactful symposium as well as other initiatives aimed at honoring the legacy of Mrs. Lacks.”