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'Something bad happened to my grandmother so that someone could get better'

This article first appeared in the St. Louis Beacon, Sept. 6, 2013 - Henrietta Lacks was an African-American woman who died from ovarian cancer in 1951. Treated in the “colored only” ward at Johns Hopkins, she was not informed when her rapidly dividing cancer cells were taken from her and cultured. Lacks died from cancer at the age of 31, but her cancer cells proved immortal, growing so splendidly in culture that the “HeLa” cells are still used today in research.

The book, “The Immortal Life of Henrietta Lacks” by Rebecca Skloot, captures the betrayal that the Lacks family felt, not having consented to or known about the research, and the irony that family members did not have health insurance.

“Before the book came out, we didn’t know about Henrietta,” said Shirley Lacks, the daughter-in-law of Henrietta Lacks. 

She and Henrietta Lacks’ granddaughter, Veronica Spencer, 27, were in St. Louis Thursday to speak to the incoming freshman class of the St. Louis College of Pharmacy yesterday. The class read the book about Henrietta Lacks over the summer as an introduction to bioethics and discussed it in groups prior to the presentation.

Although the tale was originally one of betrayal by the medical profession, Shirley Lacks and Spencer spoke to the students of how the family’s feelings about medicine have changed since the book’s publication.

And, while both women acknowledge Henrietta’s suffering, they have gained an appreciation of the advances that have come from research involving HeLa cells.

“Something bad happened to my grandmother so that someone could get better from polio. In vitro fertilization. I mean, it helped the world,” said Spencer.

Spencer is now in nursing school, and Shirley Lacks, a retired banker, says that, if she had it to do over again, she would have studied medicine. “Just from what I’ve learned from these speaking engagements, I would go into medicine because it’s this whole eye-opening arena,” she said. “It helps so many people.”

Another change that the Lacks family found was a greater willingness of the scientific community to involve the family in science. For example, Johns Hopkins now has a day every year when people can come and look at the HeLa cells.

“I had never looked at a cell before.  It was amazing to look through the microscope and see the beautiful colors. Something so tiny, and you look under the microscope, and it’s so large, and it can do so much,” said Shirley, who looked at preserved cells.

Spencer saw living cells. “We actually got to see the cells divide,” she said. “It kind of brought the family together.”

Also surprising to them was the willingness of the National Institutes of Health to involve the family in decision making about the use of Henrietta Lacks’ genome. Initially, an NIH scientist posted Lacks’ genome online without the family’s consent.

“It was just like another violation,” said Spencer.

But a phone call from Skloot to the NIH changed all that.

Skloot "was on the website and she saw that the scientists had posted Henrietta’s genome online,” said Shirley Lacks. “She put us in touch with Dr. Francis Collins, [director] of the NIH. We were amazed, because who would take the time to listen to a family?”

As a result, Spencer is now involved in decisions on the scientific use of her grandmother’s genome in research. “If there’s something that we think is harmful, we’ll redirect [the scientists requesting the genome],” she said.

Overall, Shirley Lacks and Veronica Spencer were overwhelmed at the magnitude of Henrietta’s contributions to science.  They spoke of the way her cells were used to create vaccines and help cure cancers.

“Henrietta Lacks, when you think about her, everybody has been touched by Henrietta’s cells,” said Shirley Lacks.

“I sometimes call her mother earth, because she’s touched everyone in some fashion,” said Spencer.

That's why, Spencer said, one part of their mission is “To remind health-care providers, there’s a certain way to treat people with respect.”

Incoming freshman Priya Patel, 18, said that the family’s presentation gave her more insight into their perspective.“You have to explain to your patients what’s being done to them.  You have to keep them informed.”

“I think it’s something that everyone who’s getting into health care should read,” said Kelly Prost, 18, another student. “Henrietta’s privacy, her cells, were taken from her. Her family was really hurt in the process.  I don’t want to ever hurt someone like that. Treat others the way you want to be treated.”

Prost said that she would probably not donate her own cells, if asked. “I think I would probably say no.  You never really know what people will do.”

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