Decades After Taking Henrietta Lacks’s Cells Without Consent, Johns Hopkins Names Building After Her

StoryOctober 12, 2018
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Johns Hopkins University has announced plans to name a new research building after Henrietta Lacks, an African-American woman who permanently changed modern medicine nearly 70 years ago when it was discovered that her cells could live forever. These “immortal cells” have helped scientists produce remedies for numerous diseases, including the first polio vaccine, that have saved hundreds of thousands of lives. But Lacks’s cells were taken without her consent when she was a patient at Johns Hopkins University Hospital in 1951. For decades, the woman whose cells would transform modern medicine was unknown. Instead, her cells were simply known as “HeLa”—the first two letters of Henrietta Lacks’s first and last name. We speak with Rebecca Skloot, author of the best-selling book “The Immortal Life of Henrietta Lacks,” and Jeri Lacks Whye, the granddaughter of Henrietta Lacks.

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This is a rush transcript. Copy may not be in its final form.

AMY GOODMAN: This week, Johns Hopkins University in Baltimore, Maryland, announced plans to name a new research building after Henrietta Lacks, a former patient of the university hospital who’s become known for her “immortal cells.” Henrietta Lacks was an African-American woman. She permanently changed modern medicine nearly 70 years ago, when it was discovered her cells could live forever. These “immortal cells” have helped scientists produce remedies for numerous diseases, including the first polio vaccine, that have saved hundreds of thousands of lives.

This is Johns Hopkins University President Ronald Daniels speaking at the ninth annual Henrietta Lacks Memorial Lecture, shortly before announcing the naming of the new building after Henrietta Lacks.

RONALD DANIELS: Now, each year, this day has, of course, been an opportunity afforded us, an opportunity to celebrate and acknowledge Henrietta Lacks, who, through her life and through her immortal cells, not only made an immeasurable impact on medical science, but contributed to a profound transformation at our approach to scientific inquiry and ethics and integrity, that must, of course, undergird the entire scientific research enterprise.

AMY GOODMAN: Johns Hopkins says the new Henrietta Lacks campus building will feature courses and activities that promote research ethics and community engagement.

Some members of Lacks’ family, however, have criticized Johns Hopkins’ use of Lacks’ cells, raising questions about privacy and patient rights, as well as whether the family should receive compensation for their use. Researchers at Hopkins took Lacks’ cells without her consent when she was a patient there in 1951. She died of cervical cancer the same year. But her cells were soon being duplicated in labs across the globe. For decades, the woman whose cells would save countless lives was not known by name. Instead, she was just known as—her cells were just known as “HeLa” cells—H-E-L-A, the first two letters of Henrietta Lacks’ first and last name. Even her family had no clue about her legacy until more than 20 years after her death.

Last year, HBO made a movie about Henrietta Lacks and her family’s journey to discover her true history. It stars Oprah Winfrey as Deborah Lacks, Henrietta’s daughter, and Rose Byrne as Rebecca Skloot, the author of the groundbreaking book on Henrietta’s life titled The Immortal Life of Henrietta Lacks. This is the movie’s trailer.

DEBORAH LACKS: [played by Oprah Winfrey] For years, it seemed like a dream. About our mother, could this be true? What you don’t understand is, we didn’t know nothing about nothing.

REBECCA SKLOOT: [played by Rose Byrne] Scientists have been trying to get cells to grow outside of the human body, but they would always die—until Henrietta’s cells came along. I want to write a book about your mother.

DEBORAH LACKS: Go, HeLa! Go, HeLa! That’s my mother! Hope I don’t regret this.

BARBARA LACKS: [played by Adriane Lenox] Everyone’s saying Henrietta Lacks donated them cells. She didn’t donate nothing. They took them and didn’t ask.

SIR LORD KEENAN KESTER COFIELD: [played by Courtney B. Vance] This hospital is guilty, and somebody’s going to pay.

ZAKARIYYA: [played by Reg E. Cathey] God want to have a disease cure, he’d provide one for himself!

DEBORAH LACKS: I don’t know, Rebecca.

REBECCA SKLOOT: I’m not doing anything behind your back. Henrietta helped develop the AIDS cocktail, chemotherapy treatments.

DEBORAH LACKS: It’s hard not to get caught up in hope when you’ve been powerless for so long. I know I’m a part of you, and you’re a part of me.

AMY GOODMAN: That was the trailer for the movie The Immortal Life of Henrietta Lacks. I watched it last night after midnight on the train up from Washington, D.C. An astonishing film.

We’re joined now by two guests. In Berkeley, California, Rebecca Skloot joins us, the author of the best-selling book, on which that film was made, The Immortal Life of Henrietta Lacks. And in Baltimore, Maryland, we’re joined by Jeri Lacks Whye, the granddaughter of Henrietta Lacks.

We welcome you both to Democracy Now! I want to start with Rebecca, before we talk about the building, to talk about this story, for people to understand how significant Henrietta Lacks’s cells are to the contribution of science, a contribution she did not know she was making at the time.

REBECCA SKLOOT: Yeah, I mean, there isn’t a person out there who hasn’t benefited in numerous ways from the cells. You know, the vaccines that we all get were developed using her cells. They were the first—her genes were some of the first ever sequenced. They went up into space to see what would happen to human cells in zero gravity. In vitro fertilization was developed with the help of her cells. I mean, just the list goes on and on and on. It’s just kind of inconceivable how—

AMY GOODMAN: And what was it about Henrietta Lacks’s cells, the HeLa line? What is it about her cells? I mean, she had cervical cancer.

REBECCA SKLOOT: Yeah, so, these are her cancer cells. And she had an incredibly aggressive cancer that grew sort of unlike many cancers. It went from a tiny tumor on her cervix to, just within a few months, there were just tumors covering every organ in her body. And part of what is amazing about her cells is that they were first, but also they grow with this intensity that really was never seen in labs and kind of hasn’t been seen since.

AMY GOODMAN: And so, what did Johns Hopkins do? How did they realize this? And then, how did they start—how did they take the cells, and what happened to them?

REBECCA SKLOOT: Yeah, so, they didn’t realize anything. I mean, she just happened to walk into Hopkins in the '50s at a time when scientists all around the world were trying to grow human cells outside the body, and it had never worked. And so, at Hopkins, there was one of the leading tissue culture researchers who was kind of at the head of this field, and he was taking samples from anyone he could get his hands on—any patients who walked into the hospital, himself, his kids, his friends—and basically was just trying to grow any cells he could. And so it really was this kind of chance confluence of events that Henrietta, with this incredible cancer, arrived at the location where this man had been trying to do this for so long. So it wasn't that they targeted her, that they said, “Oh, her cells are interesting.” She just went in for a routine biopsy of her tumor, and they just took an extra little piece and put that in a dish, and that’s what became the cell line, and that she never knew about.

AMY GOODMAN: But they did, and they knew how valuable it was. So, they didn’t tell her. She died. And they didn’t tell her family. Is that right? In fact, they understood that they wanted information from her family, as well, their genes, as well.

REBECCA SKLOOT: Well, so, actually, they didn’t—yeah, they didn’t know these were going to be valuable. So, at the time, we didn’t know anything about cells. There were just trying to cure cancer. They were like, “If we can grow cancer cells outside the body, maybe we can figure out why it’s so powerful.” They had no concept. There was no industry connected to any of this, or biology, really, in general. They hadn’t—DNA hadn’t been discovered yet, so they couldn’t know that someday they’d be able to look in these cells and learn about her family. So, it’s important to look at this story within the context of history, in that way, that they really had no idea what they were potentially discovering or that there was potentially any gain in it.

And they didn’t have any sense that they wanted anything from her family until 25 years later, in the '70s. And at that point, you know, genome sequencing was starting. And what they wanted to do was look at some of her family members' cells and their genes. And it was in order to learn more about the cells. There was no financial interest at that point. There wasn’t someone saying, “Oh, we can make a bunch of money if we take samples from her family.” It wasn’t that at all. But they went back to her kids at that point, because there were things they needed to know about HeLa cells that they wanted to be able to learn about her genes in order to do that.

AMY GOODMAN: And did they explain this to the Lacks family as they were—

REBECCA SKLOOT: Right.

AMY GOODMAN: —doing experimentation on them?

REBECCA SKLOOT: Yeah, no. And that’s the key. I mean, there were sort of several big ethical moments in the story. And the first is, in the '50s, they took these samples without her knowledge. You know, should we do that? Should we not? That was the ’50s. And then, in the ’70s, when they went back to her family, it was—it raises these other questions about what should—you know, should people have to be told when they're—kind of researchers are going back to them and asking for more samples? And in the '50s, we didn't have any practice related to that. There were no laws saying they needed to ask. It wasn’t standard procedure. But in the '70s, it was. The law had actually been written saying you have to ask in a situation like this, but hadn't been codified into law. But at the time, any—most people would have asked, and they didn’t.

The family thought that they were being tested to see if they had the same cancer that Henrietta had, which wasn’t the case. So they actually thought they were receiving medical care, when in fact they were being used in research, and there was no personal gain to them at all. And Deborah, her daughter, asked a lot of questions in that moment about what was going on, and just nobody explained it to her. And, to me, that’s really the heart of the ethical story, is that moment, when her family got drawn into research without their knowledge, without their consent. And then, you know, this continued to happen over the generations after that.

AMY GOODMAN: And using her cells without their consent—your book is published—the scientists sequence the HeLa genome, post it online.

REBECCA SKLOOT: Right.

AMY GOODMAN: What was the impact for the Lacks family? And did you feel that constituted an ethical breach, before we go to Jeri?

REBECCA SKLOOT: Yeah, so, right. In 2013, so three years after the book came out, a group of scientists sequenced the HeLa genome, which had a lot of value for science, because you can learn a lot about the cells that way. But the cells also contained Henrietta’s personal genes. And yeah, they posted this online. And, you know, these days, people take swabs of your cheek cells and send it to companies like 23andMe, and you get this report that says everything from, you know, you may get early-onset Alzheimer’s to, you know, you have male pattern baldness genes or whatever. And, you know, people often go to genetic counseling to decide if they want that information. They certainly don’t usually publish it online or have that happen without their knowledge. And that was what happened with these in this moment, was that the genome was sequenced, posted online, where anyone could download it, and you learn a lot about Henrietta, her kids, her grandkids from that. And so, it was a big moment.

And also, there were no laws saying that that couldn’t happen. And, in fact, there had just been a commission. Obama had just had his bioethics commission look at the question of whether we were in danger, sort of the way that the regulations were now, of this being able to happen to people. And it was just a couple months later it happened to the Lacks family, which is sort of what happens with bioethical questions. If it’s going to apply to you or to me or anyone watching this show, related to your cells, your genes, privacy, it’s probably going to happen to them first. And that’s one of the things that the family, in that moment, once they found out it had happened, they said, “OK, this is enough. We want to be part of this from here on out. We don’t want future generations to be—to have this happen to them again.” And sort of a long story short, they ended up taking the sequence offline, and the NIH ended up creating essentially a committee, with a few members of the Lacks family and some scientists, where now if you want to do research using the genome of the HeLa cells—not the cells themselves, just the genes—you have to put in an application. And it’s actually reviewed by a few members of the Lacks family to see it they feel like it’s warranted.

AMY GOODMAN: So, I want to bring Jeri Lacks Whye into this discussion, the granddaughter of Henrietta Lacks. Henrietta Lacks, known around the world, her contributions to medicine are immeasurable—but not known as Henrietta Lacks, known as HeLa and the HeLa cells, taken from her name. Jeri, when did you understand what happened to your grandmother’s cells?

JERI LACKS WHYE: It was when the book actually came out. That’s when I found out a lot of information about my grandmother, about her tremendous contributions to science. We knew, when we were growing up. that she helped with the polio vaccine. We knew that she died from cancer, but we just didn’t know what type of cancer she died from. So, when the book came out, it gave us so much information that we didn’t know, that our parents didn’t know. So it was like a generational thing, where one generation didn’t know, so they couldn’t tell the next generation. So now the grandchildren know. Henrietta’s children know. So we make sure that our children know, so we can carry on, so they can carry the legacy and bring awareness to Henrietta’s tremendous and huge contributions to science.

AMY GOODMAN: Now, you were involved in the decision of Johns Hopkins to name the building after your grandmother, Henrietta Lacks. Can you talk about the evolving relationship between you, the family and Johns Hopkins?

JERI LACKS WHYE: Well, we had a discussion last year about naming a building after Henrietta Lacks. You know, some family members agreed, and some family members didn’t agree about naming a building. And that’s expected. We have a large family. A lot of people are opinionated. So, we was grateful that they actually moved forward with naming the building. And it was just amazing, because I know at one point last year when we was talking about, you know, what we wanted Johns Hopkins to do to honor our grandmother, one of the family members said, “OK, well, maybe they should name a wing after Henrietta Lacks, or maybe they should put a bench near Johns Hopkins with her name or name a Henrietta Lacks reading room inside of Johns Hopkins.” But when they came to us and said, “OK, well, we’re going to name a building, an entire building, after your grandmother,” you know, we was excited and grateful that actually Johns Hopkins is honoring our grandmother in such a fulfilling and tremendous way.

AMY GOODMAN: Now, you and two other family members serve on a panel at the National Institutes of Health to approve who gets to use the HeLa cells in their research, Jeri Lacks Whye?

JERI LACKS WHYE: Yes. It is. It’s two family members that’s—well, actually three. In the beginning, it was just two, but then they added another family member to serve on the committee. And what we do is just review applications from researchers just to make sure that they meet the criterias that has been formulated, to make sure that they meet what is required of them and just—I mean, it has been exciting just to actually look at—even though I’m not a sciency type of person, but just to look at what researchers are using the HeLa cells for and what they’re hoping to accomplish. And, I mean, I just look at it. It’s like these really big words, so I have to google some of the words to kind of get an understanding. But the main part is that the family is directly involved. We’re not the last to know; you know, we’re the first to know. So I think that gives us an advantage in taking control of our grandmother’s data.

AMY GOODMAN: Was any financial deal ever worked out between the university, researchers and your family, the Lacks family?

JERI LACKS WHYE: No, no. No compensation. No monetary. We wasn’t asking.

AMY GOODMAN: And how did you feel about the HBO film with Oprah Winfrey, that portrayed your family and what happened with your grandmother’s cells?

JERI LACKS WHYE: I think the movie did a very good job. It definitely got the story out there for people who are nonreaders or people that don’t like reading a lot. They portrayed my—some family members very well. And the only thing I kind of like—OK, I’ll—some of the dialogue, it was like a little country, but other than that, I mean, everyone portrayed each family member very well. I think they did a very nice job in doing the story. I wish it was a little longer, like a miniseries or they could have did a two-part. But in all, it was a great movie. I think it was a great movie. And, you know, so many people just come up to us and just say, “We’re happy and glad that this movie has been done. We’re happy and glad that the book has been written,” because so many people don’t know her story, don’t even know her story.

AMY GOODMAN: Well, Rebecca Skloot writes, “One scientist estimates that if you could pile all HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons—an inconceivable number, given that an individual cell weighs almost nothing. Another scientist calculated that if you could lay all HeLa cells ever grown end-to-end, they’d wrap around the Earth at least three times, spanning more than 350 million feet. In her prime, Henrietta herself stood only a bit over five feet tall.” Jeri Lacks Whye, as we wrap up—we just have 10 seconds—how proud are you of your grandmother?

JERI LACKS WHYE: Oh! Words can’t—I don’t know. Words can’t describe how proud I am of my grandmother. I mean, just knowing her story and what she has done, not just for a certain group or—she just did so much for the world, and I’m just so proud that I had the chance or I’m getting the chance to know my grandmother, to know her contributions and to actually go out and advocate and bring awareness to her story.

AMY GOODMAN: We’re going to have to leave it there. Jeri Lacks Whye, I want to thank you so much. And we’ll continue Part 2 with Rebecca Skloot, The Immortal Life of Henrietta Lacks.

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