Family of “Immortal” Henrietta Lacks talks about her medical legacy

Relatives of a woman whose cancer cells unknowingly became the basis for much medical research decades after her death says they now carry a message of empowerment to patients and young people to ask questions and believe in themselves.


The family of Henrietta Lacks was part of a panel discussion Thursday night at the Imperial Theatre sponsored by Augusta University, along with the author who researched her case and made her famous. Lacks, a wife and mother of five, died from cervical cancer in 1951, but not before a sample was taken from her tumor without her consent at Johns Hopkins Hospital and then grown in test tubes to become the world’s first immortal line of human cells, according to the best-selling book, The Immortal Life of Henrietta Lacks, by Rebecca Skloot.

Dubbed HeLa cells and grown and sold innumerable times to laboratories and researchers, they played a role in a wide range of medical breakthroughs, from the polio vaccine to the mapping of the human genome, according to the book. Her story has also been told through a recent HBO movie adaptation of the book starring Oprah Winfrey.

Now Lacks’ daughter-in-law, Shirley Lacks, and great-granddaughter, Victoria Baptiste, travel the country speaking about Lacks and lessons from her experiences. And even with the book and the movie, there are still many who do not know of her and her legacy, they said.

“Even a lot of physicians still have not heard of Henrietta,” said Baptiste, a nephrology nurse. “They’ve probably inadvertently used those cells and just not known who they were from. I’m always surprised by that.”

Lacks said she wants people to remember her mother-in-law as a wife and mother and as an ordinary person who made an incredible contribution.

“I always say you never know where life is going to lead you so you can’t count people out just because of who they are,” she said.

Her monther-in-law’s experience shaped the way Lacks looks at medicine, and she saw the need to advocate when her own mother became seriously ill.

“She would go to the doctors and they would tell her things and she would just accept whatever they said,” Lacks said. “And sometimes she would say, ‘I don’t know what it means.’”

Lacks was fortunately able to retire from her job in the banking industry and accompany her mother on these visits, where she began to question the doctors about the mediation and hold them accountable when it wasn’t working for her mother. It is something she still does with her own doctor.

She began to realize that people can get bad outcomes “if you don’t speak up for yourself, if you don’t ask questions and dig deep and educate yourself,” Lacks said. “People have to take ownership of their own health.”

Baptiste said the younger generation should help the older generation do that as well “because sometimes they do feel intimidated when they go to the doctor’s office and places like that and they don’t want to ask questions because of that old mentality of the doctors know what’s best so you don’t question them. We have to make sure we look out for our elders because they are the ones who hold our legacies and our history behind us so we have to make sure we care for them.”

As a nurse and an educator and a descendant of Lacks, she feels a personal responsibility to do that as well.

“The more I advocate for my patients, I feel like I am really fully trying to promote the legacy of Henrietta because she did not have anybody advocating for her – not the nurses, not the doctors – and the time then was so very different,” Baptiste said. “The situation in medicine was totally different. If the doctor says it, you do it, you don’t question it. But now I think nurses are starting to find their voices and really stepping up to the plate” to advocate for patients.

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the discovery of immortal cells

In 1951, a young mother of five named Henrietta Lacks visited The Johns Hopkins Hospital complaining of vaginal bleeding. Upon examination, renowned gynecologist Dr. Howard Jones discovered a large, malignant tumor on her cervix. At the time, The Johns Hopkins Hospital was one of only a few hospitals to treat poor African-Americans.

As medical records show, Mrs. Lacks began undergoing radium treatments for her cervical cancer. This was the best medical treatment available at the time for this terrible disease. A sample of her cancer cells retrieved during a biopsy were sent to Dr. George Gey’s nearby tissue lab. For years, Dr. Gey, a prominent cancer and virus researcher, had been collecting cells from all patients who came to The Johns Hopkins Hospital with cervical cancer, but each sample quickly died in Dr. Gey’s lab. What he would soon discover was that Mrs. Lacks’ cells were unlike any of the others he had ever seen: where other cells would die, Mrs. Lacks’ cells doubled every 20 to 24 hours.

Nicknamed “HeLa” cells – from the first two letters of her first and last names – they are used to study the effects of toxins, drugs, hormones and viruses on the growth of cancer cells without experimenting on humans. They have been used to test the effects of radiation and poisons, to study the human genome, to learn more about how viruses work, and played a crucial role in the development of the polio vaccine.

SOURCE: John Hopkins Medicine