Reclaiming Henrietta Lacks

Family members of a woman who changed modern medicine — without her knowledge and certainly without her permission — spoke at a gathering of scientists in San Antonio recently about ethics and equity in science and medicine.

By Bonnie Petrie, Texas Public RadioJune 14, 2023 10:00 am, ,

From Texas Public Radio:

When Henrietta Lacks died in 1951, it seemed as though all memories of her life were buried along with her body, in an unmarked grave in Clover, Virginia.

“They didn’t talk about Henrietta and didn’t ask any questions,” said Shirley Lacks, who never knew Henrietta.

She married Henrietta’s son, David, and was close friends with her daughter, Deborah. But for years, all Shirley knew was that their mother was dead. She died when they were kids of a vicious cancer. Beyond that was silence.

Henrietta’s daughter, Deborah, was a toddler when her mother died. While Shirley didn’t ask any questions, Deborah had a lot of them.

“She wanted to know what her mother was like. What what food her mother liked, what clothes her mother liked. What did her mother smell like?” she said. “What did her mother do for her when she was a bit, and nobody answered those questions for her. So she didn’t find out anything about her mother until she went on a journey with Rebecca Skloot. And they started and they wrote the book.”

The Immortal Life of Henrietta Lacks, written by journalist Rebecca Skloot, would provide a kind of eulogy for the children who had no memories of her life or her death.

But it would also introduce the world to a woman who changed the face of science and medicine forever without even knowing it.

Shirley and her son, David Lacks Jr, recently stopped in San Antonio to share Henrietta’s story at the Texas Biomedical Research Institute’s 3rd Global Health Symposium.

When Henrietta Lacks – a wife, a mom, a sister and a friend – was fighting for her life against an aggressive cervical cancer in the segregated ward for Black patients at Johns Hopkins Hospital, a researcher — without asking her or even telling her — scraped some tissue samples from her cervix.

Informed consent was not a thing back then, and Skloot noted in her book that many researchers in hospitals that treated poor people for free, like Johns Hopkins, believed it was fair to use them as research subjects as a form of payment.

And where Lacks was, in the segregated ward, consent wasn’t a concept anyone even considered.

So the researchers scraped the sample and took it back to the lab to see if it would grow. It probably wouldn’t, none ever had before. Not for long, anyway.

But Henrietta’s did. Her cells survived and multiplied and never stopped, reproducing themselves every 24 hours. Average cells will have about 50 reproductions in a culture medium and then die. But more than 70 years later, Henrietta’s still haven’t stopped.

Henrietta’s cells, which became and are still known as HeLa cells for the first two letters of her first and last name, would make it possible to develop a polio vaccine. They would help scientists understand the impact of x-rays on human cells. They would be shot in a capsule into outer space to see what that did to human cells. They would play a role in the development of COVID-19 vaccines.

They did all this and much more — but her children knew nothing about any of it. Shirley Lacks said they had no inkling that their mom’s cells were special until the mid-1970s, more than 20 years after she died and the silence engulfed them.

“I think when they came and drew blood from the family, when they drew blood from the family, the brothers and sister, they told them they would draw blood to see if I think if they had the same thing that Henrietta had.”

Researchers from Johns Hopkins had drawn blood from Henrietta’s children, claiming they were testing them for the cancer that killed their mother. They were, in fact, doing research on the children, without their knowledge or consent — again.

Like their mother before them. No knowledge. No consent.

Shirley Lacks said to her husband and his siblings, this felt like a deep and compounded betrayal.

“Back when the all this started, a lot of Henrietta children were going through health, having have health issues, and they had problems with trying to get the proper medical care,” she said. “And all the time they had been using Henrietta’s cells, making millions and millions of dollars off of her cells.”

The Lacks family couldn’t afford to see doctors while scientists were using their mother’s cells to save strangers.

“Hopkins to say they didn’t get any monetary reward, not directly, but indirectly they benefit from the HeLa cells. So, you know, just when I think about it is the fact that I just think Hopkins could do something for the family,” she said. “That’s where the some of the family members upset in reference to what has taken place with the HeLa cells.”

This all seemed wrong, to the Lacks children. This lack of consent. This silence. These decades of suffering while their mom’s cells saved lives. And they knew nothing about it.

Dr. Larry Schlesinger, Texas Biomedical Research Institute president and CEO, welcomed the family to San Antonio for a conference about equity and ethics in medicine — honoring them and acknowledging their pain.

Bonnie Petrie / Texas Public Radio

“What a story. What an honor to meet both of you here today in San Antonio, Texas, and and what it seems to be talking about today in this important film on health equity, community, trust and science,” he said. “We’ve made mistakes, and there’s been quite a bit of mistrust out there, particularly for those individuals who are underserved or not seen enough. And I think we need to do better. I think this community understands that we need to do better.”

Members of the Lacks family, like Shirley and David jr, now travel the country talking about ethical matters like informed consent. They talk about equitable access to health care and to the fruits of the discoveries made using Henrietta’s cells. They’ve fought to gain a say in what happens with her cells … and with her sequenced genome. They are reclaiming their relative.

But despite all the injustice Henrietta and her cells uncovered, Shirley Lacks said her late husband David was extremely proud of her legacy.

“When this book first came out, my husband had a gentleman come visit him from I think it was China. And he said the gentleman was talking to him, and he couldn’t understand anything he was saying. And someone translated the fact that he was grateful for his mom. The gentleman told him he was grateful for his mom’s contribution because of his mom’s cells he was living … at that particular time. So it was just just amazing,” she said.

Henrietta Lacks could not have imagined all the things that have happened because of her immortal cells.

She was a tobacco farmer in rural Virginia, a housewife in Baltimore, and a mom who loved to dance and to cook for the whole neighborhood. She wasn’t a doctor or a scientist. What does her daughter-in-law think she would think about her immortal life?

“I think she would be elated because of the fact, just reading what we read in the book, she was a person who’d like to help,” she said. “And she also was a person who’d like to serve. So her cells helped and served a lot of people.”

And helped them live longer, while her cells live forever.

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