The 'Immortal' Story Of One Woman's Cells

In The Immortal Life of Henrietta Lacks, author Rebecca Skloot tells the story of Henrietta Lacks' 'immortal cells' — cells taken from a tumor on her cervix and kept alive to multiply in laboratories around the world — and how Lacks' children discovered their connection to the cells.

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You're listening to SCIENCE FRIDAY. I'm Ira Flatow.

If you're a student of biology, a cancer researcher or a survivor, you owe your profession and perhaps your life to a colony of cells most likely sitting in a refrigerator not too far from you at this very moment, cells that can trace back their origins 50 years ago to one single person who, unwittingly, was the donor of those cells to science.

In her new book, my next guest tells the story of the world-famous cell culture known simply as HeLa, short for Henrietta Lacks, the woman they were taken from in the early 1950s.

The book is "The Immortal Life of Henrietta Lacks," and this hour, we'll be talking about her story. And if you'd like to join the discussion, our number is 1-800-989-8255, 1-800-989-TALK. And you can also tweet us @scifri, @-S-C-I-F-R-I, and join folks over there in Second Life.

Rebecca Skloot is the author of "The Immortal Life of Henrietta Lacks." She's also a science writer based in Memphis. She joins us from New Hampshire Public Radio. Welcome to SCIENCE FRIDAY.

Ms.�REBECCA SKLOOT (Author, "The Immortal Life of Henrietta Lacks"): Thanks for having me.

FLATOW: How - tell us about how these cells came to be.

Ms.�SKLOOT: Well, Henrietta was a sort of poor, African-American tobacco farmer who lived - who grew up in Southern Virginia, and then eventually moved to Baltimore. In 1951, she was diagnosed with cervical cancer at Johns Hopkins Hospital, and she went under anesthesia for, you know, the sort of standard treatment of the day, which was sewing radium tubes to the surface of the cervix to essentially sort of burn off the cancer.

And before taking this - before applying the radium, her doctor took a small piece of her tumor and sent it down the hall to George Guy, who was the head of tissue-culture research at Hopkins. He'd been trying to grow an immortal human cell line in culture for decades, and it had never worked. They would sometimes grow, but eventually die.

And her cells are still alive today. So she died about eight months after the sample was taken, and her cells are just still growing all over the world.

FLATOW: And there were lots of them, right?

Ms.�SKLOOT: Yes, lots. So they grew with this sort of incredible intensity. Within a few days of being put in culture, they were doubling their numbers every 24 hours, and they can grow in large vats of culture medium. So pretty soon after her death, you know, these cells went on to become just an enormously important took for science.

They were used to help test the polio vaccine. They went up in the first space missions to see what would happen to human cells in gravity. You know, they were the first cells cloned. Some of the first genes mapped were hers. And the volume of research being done on them, you know, there was this enormous demand, so that fairly soon after her death, a factory was created to mass-produce these cells to the tune of about three trillion cells a week, which were grown and sent out to labs around the world.

FLATOW: And so how much of a royalty did she and her family get from these cells?

Ms.�SKLOOT: Yeah. That would be none. And you know, initially, they were just given away for free. So George Guy, when he first grew the cells, you know, he and a lot of other people had been trying to do this for a long time, and when he succeeded, he just, you know, started telling his friends and colleagues, hey, guys. You know, I found this - did this immortal human cell line. And he would just send them for free.

And they didn't start - they eventually were sold for - the bank that - or the factory that first started mass-producing them was a nonprofit. But eventually, a company did start up basically just selling HeLa cells, and then that company grew and expanded and started doing other things. And, you know, now we have a sort of multi-billion-dollar industry that's, you know, buying and selling cells and tissues and patenting genes and things, and that really all is traced back to her cells.

And, you know, her family, you know, they can't even afford health insurance. They don't have access to the care, you know, the medical advances that their mother's cells helped developed. And that's a source of anger for them.

FLATOW: So why is it possible for everybody to make so much money and she not -or her family not to get anything from it? Is that just how it is with cells? You can take them out of somebody's body and do whatever you'd like with them?

Ms.�SKLOOT: It kind of is how it is. Particularly in the '50s, you know, these - taking someone's cells without their knowledge or consent was an absolutely standard practice at the time, and it still kind of is.

There are different levels of sort of regulation now. If you're just taking a sample only for research purposes, you have to tell someone that you're doing it. There's nothing that requires, you know, that you - if you're a researcher, you don't have to reveal that you may - this may become a commercial product or that there may be money involved someday.

And if the cells are taken for, you know, routine medical practices - you know, like biopsies or blood tests or something like that - you know, we often sign forms that say my doctor can dispose of my tissues any way he or she sees fit. And often, that means saving them and doing research. And we don't - a lot of people don't realize that that's the case.

FLATOW: So there could be hundreds of millions of people with their cells in different refrigerators around?

Ms.�SKLOOT: Oh, there are. Most certainly, yeah.

FLATOW: Wow. And you said in your book that if Henrietta had realized that that's what they were doing, she would have said no.

Ms.�SKLOOT: Oh, no, actually, you know, it's hard to know. Really, you know, I've talked - there have been a lot of cases where people have found out that their cells were used in some sort of research that they didn't approve of or that they were - you know, in one case, a guy's cells were patented and licensed and worth several billion dollars, and he found out sort of after the fact.

So lawsuits have resulted from this. And I've talked to people involved in all the different cases, and across the board, really, the bottom line seems to be if they had just asked us, we would have said yes. But since they didn't ask, and then they made money...

FLATOW: Well, I'm asking, if they had asked Henrietta that we want to take some of your cells, she would have said yes.

Ms.�SKLOOT: Yeah. Well that's - I mean, that - her family, that's sort of the line that her family takes. You know, they say a lot of the anger surrounding the story of these cells is the fact that they never found out. And not only that, but then, you know, later, scientists came back to the family and used the family, used their children in research.

And so it's a sort of long saga with the family. And it often comes back to the fact that they just felt like they were lied to. But then, of course, the money issue does become a big one at that point.

FLATOW: You talk about you calling the family up and doing your research, and -I don't remember who picked up the phone, but saying, oh, it's somebody - it's a white person on the phone, and they must just want to talk to me about Henrietta's cells.

Ms.�SKLOOT: Right. Yeah.

FLATOW: That's all they're interested in.

Ms.�SKLOOT: Yeah, right, exactly. They were sort of - they had had many scientists come to them, wanting something having to do with the cells, journalists, various people. And I was just sort of the next in a long line of them.

FLATOW: Henrietta's daughter, Deborah, seemed to be the most affected by the story of the cells. How much did she actually know about the science when you met her?

Ms.�SKLOOT: Yeah, well, when I met her, still, no one had really even explained what a cell was. So the family found out - Henrietta died in '51, and her family had no idea the cells were alive. She had five kids when she died.

And it wasn't until the early '70s that some scientists decided to track down her kids in order to do research on them to learn more about the cells. This was the early days of gene mapping, and they wanted DNA samples from her kids.

And so they called her husband up. Now, he had a third-grade education. He didn't know what a cell was. And the way he understood the phone call was, you know, we've got your wife. She's alive in a laboratory. We've been doing research on her for the last 25 years, and now we have to test your kids to see if they have cancer - which wasn't what they said at all, but, you know, he didn't understand. They didn't realize it.

And then the scientists would come and take samples, and they'd come and go, and the family sort of waited for their test results, and they never came. And Deborah would periodically ask questions of the researchers, and they just -they didn't know how to explain this stuff to the family.

And so, you know, at one point, one of the doctors gave - handed her a medical school textbook and said, here. Read this chapter, you know, this page about your mother's cells, and this'll tell you everything, you know. And, I mean, her - most of the Lacks children didn't - you know, some of them went through high school, some of them not. They're hard of hearing. They couldn't - can't really read or write because they didn't get the attention they needed in school. So, you know, they couldn't understand any of this.

So - and when I came along, yeah, they were still in the dark about what the cells were, what they meant to Henrietta and to them. You know, her daughter, particularly, is a very spiritual, you know, religious woman, and she very much believed that her mother's soul was alive in these cells and had a lot of questions about, you know, can she rest in peace if her mother's cells are being shot up to the moon and, you know, injected with chemicals and things.

And so part of the book is this story of Deborah and I, essentially, going and trying to - her trying to - learning about the cells and sort of trying to come to peace with them.

FLATOW: Mm-hmm. And one of the women in the Lacks family, Babette(ph), talks in the book about her belief that Hopkins would kidnap black people to experiment on them.

Ms.�SKLOOT: Yeah.

FLATOW: Where did that belief come from?

Ms.�SKLOOT: Well, it's a very common belief among the black community in a lot of places - not just surrounding Hopkins, but, you know, definitely this exists in East Baltimore, around Hopkins. And it comes from a lot of different things.

You know, early sort of - back in slavery time, there were these things called night doctors. You know, slaves were often used in research without their consent, some of it pretty horrible. And slave owners would often tell the slaves, you know, you, if you go outside at night, the night doctors are going to take you away and do this sort of awful, barbaric stuff to you.

And this is a way of controlling their slaves. And, you know, they would even -the slave owners would dress up in, you know, in these gowns and sort of pretend to be the doctors.

So some of it comes from this long sort of oral history that started with that. But then, you know, after the slavery time, there really were cases where, you know, black people's, you know, bodies were stolen for research or, you know, taken in some way, and...

FLATOW: Or the Tuskegee syphilis experiments.

Ms.�SKLOOT: Right. Then there were cases like the Tuskegee studies, where African-American men with syphilis were essentially studied and - to watch the progression of the disease and see how it killed them without being offered penicillin when it became available to treat it.

And so there a lot of stories in the history of science of African-Americans being used in research without their consent. And, you know, so those things, you know, they live on in families, and there's a lot of fear surrounding that.

And then other stories - I mean, Henrietta Lacks' story has often been held up as another example of that, you know, this sort of, you know, racist white scientist who stole this woman's cells because he knew they'd be valuable. Some people believe George Guy gave her cancer, or at least didn't treat it in order to let the cells grow - none of which is true, but, you know, there's a reason they believe this.

FLATOW: Did you feel you had to set that record straight in your book by telling this story?

Ms.�SKLOOT: Oh, absolutely. Yeah, absolutely. You know, part of - one of my goals with the book was to really show both sides of the story. You know, scientists often believe that the Lacks family is just this sort of money-hungry family, and they're making up their complaints just because they see a price tag here, which isn't the case at all. And, you know, the general public often believes something very different about scientists than what actually happened.

So I really wanted to tell both sides of the story and show that it's very complicated. You know, the good-guy-bad-guy thing just doesn't quite work here, and that there are all these issues that are, you know, issues of ethics that are tied up with this very important science that, you know, we don't want the end result of this to just be: Let's stop doing this stuff. Like, well, let's not let scientists use our tissues, because it seems scary. Because, you know, that's - it's such important research. We want this to happen.

So there's no really clean-cut answer, and by laying out both sides of the story, I hope to sort of humanize both the scientists and the people behind the samples.

FLATOW: Well, you've done very well in the book. It's called "The Immortal Life of Henrietta Lacks." I'm talking with Rebecca Skloot. We're going to take a short break, come back and talk more with Rebecca about her book, "The Immortal Life of Henrietta Lacks." Our number is 1-800-989-8255 if you'd like to participate. Also, you can tweet us @scifri, @-S-C-I-F-R-I. So stay with us. We'll be right back.

(Soundbite of music)

FLATOW: I'm Ira Flatow. This is SCIENCE FRIDAY from NPR.

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FLATOW: You're listening to SCIENCE FRIDAY from NPR. I'm Ira Flatow, talking with Rebecca Skloot, author of the book "The Immortal Life of Henrietta Lacks." Our number: 1-800-989-8255. Let's see if we can get - give some information. We'll go to the phones. Let's go to Sevika(ph) in Tallahassee. Sevika, are you there?

SEVIKA (Caller): I'm here. How are you doing?

FLATOW: Hi, there. Go ahead.

SEVIKA: I think this is a great show. I heard you, I think it was on Terry Gross, and I notice that on today's show and on the last show, that you didn't specify who or what companies actually own the patent to her cells. Is there, like, a legal reason why? Nothing?

Ms.�SKLOOT: No, there's not. It's because no one does. You know, the patenting of cells didn't really start until the, like, late-'60s. So no one owns a patent on HeLa cells. George Guy gave them away for free. And this one company did start up in the '50s, and they were selling her - they were the - you know, her cells were the first ones to ever commercialize.

So they started with hers. And that company was calling Microbiological Associates, and it sort of grew and branched into a lot of different companies. And you can - today, you can trace back some of our really big biotech companies to that one. You know, Invitrogen is one of them, BioWhittaker. They didn't - you know, you can't really say, oh, these places all became what they are today because of HeLa. But, you know, their sort of family trees go back to this one company.

And - but yeah, so, you know, in the '50s, people had no concept that you would someday be able to patent a cell.

SEVIKA: Or patent (unintelligible).

Ms.�SKLOOT: Or patent anything alive, right. So it wasn't something that entered into the sort of thinking about HeLa cells until pretty late in the game.

FLATOW: Thanks, Sevika.

SEVIKA: Thank you.

FLATOW: You're welcome. 1-800-989-8255. Have you gotten any flack from scientists for this book?

Ms.�SKLOOT: I've gotten some. For the most part, I've been really just sort of amazed by the response from scientists. They - across the board, I just get so many emails from scientists who say: I've been working with these cells my entire career. You know, I did my Ph.D. dissertation on these cells. I've been growing them in my lab forever, and I had no idea. I never stopped to wonder where they came from. And now - you know, and they feel a very personal connection to this story, and several of them have described the experience as being, like, now their lab is sort of haunted. They go in and, sort of, you know, her cells are everywhere, and they look in the microscope, and they see her.

But I have had very few scientists who have, you know, essentially complained, and one actually accused me - say that it was irresponsible to tell the story at all because I was going to give people the idea that they should be able to control their tissues.

There's a lot of fear in the scientific community that, you know, at some point, you know, consent is going to be required to do research on any tissues at all, and that there's going to be levels of consent, which is something people have been calling for for a long time.

You know, some people have said I want to - not only do I want to know that my tissues are being used in research, I want to be able to say, you know, I'm fine with you using it for cancer research and all of this other stuff, but I don't want you to use it for, you know, say stem cell research or something that doesn't sort of - you know, isn't in line with my beliefs.

And, you know, there's a lot of concern that that's going to inhibit science, or that people are going to get the idea that everyone is walking around with these gold-mine cells that are worth millions of dollars, which isn't the case. It's very rare that a cell is worth something. The value of cells to science is in large quantities of them that they can use.

So there is a bit of concern among scientists that, you know, that just talking about this story is going to raise, you know, the awareness that this is going on and make people feel like - make people start to demand something, whereas I actually don't think that's the case. And I think, for the most part, the scientists who've said that haven't read the whole book and gotten the full story, because a lot of them say, well, so what? They took her cells without asking. That didn't hurt her. She wasn't using them. You know, she was going to die, anyways - no big deal.

But, of course, there are a lot of - the book, the story of the Lacks family is about much more than that moment when the cells were taken. I mean, there's this legacy of privacy violations and all sorts of other stuff.

FLATOW: And it's a very interesting book. I'm talking with Rebecca Skloot, author of "The Immortal Life of Henrietta Lacks." Let's go to Nate - Benson, Michigan. Hi, Nate.

NATE (Caller): Hi, how are you doing?

FLATOW: Hi, there.

NATE: I was wondering if the author has offered any money to the family for participating in her book.

Ms.�SKLOOT: It's a good question. I'm glad you asked. And it's one of the first questions I often get.

(Soundbite of laughter)

Ms.�SKLOOT: So, yeah, when I came along and started doing research for this book, I knew that I didn't want to sort of be, you know, another person who just came along and got something from the family and then just sort of went away and potentially benefited myself without sort of them getting something out of it.

You know, in journalism, there's this sort of code of ethics that says you don't just pay someone for their story. You don't write them a check and sort of buy it from them, because it changes the whole journalistic dynamic.

But I did want to do something. So I started what's called the Henrietta Lacks Foundation. It's at henriettalacksfoundation.org. And I am putting some of the proceeds of the book in there, and it's open for anyone to donate to. And I'm doing a lot of, you know, talking about it and trying to get some funds in there, and it's - among other things, it will be - it will offer scholarship money to any descendents of Henrietta Lacks who want to go to school.

One of the big things that their story is about, really, in a lot of ways, is lack of education and the importance of the general public being able to understand science, and scientists sort of being able to communicate it to them.

So I felt like an education fund was appropriate. And there's also - you know, I hope that it will - the fund will work out well enough so that it will be able to offer health insurance or health care help for her kids, who are to this day still uninsured and unable to get good medical care.

FLATOW: It's an amazing story. It's an amazing book. And no one has figured out why her cells were so unique. And the main title of your book, "The Immortal Life" - and that means these cells, as you mentioned earlier, they're immortal cell lines. They go on forever. You just feed them, and they continue to reproduce. Unique, right? There's no other cell line quite like that. And do we know why that is?

Ms.�SKLOOT: Right. I mean, there are other immortal cell lines now. You can even immortalize a cell. So you can take a normal cell and make it become immortal. But this sort of spontaneously, naturally immortal cell like hers, for a human cell, yeah, there hasn't been one quite like hers.

There have been others, you know, maybe that, you know, didn't grow quite as much. But the thing about - and then we do know a few things about why her cells grow. You know, she had HPV, which caused her cervical cancer. She had multiple strains of it. So there's something, you know, the virus, it sort of interacted with her DNA to cause the cancer.

She also had syphilis, which weakens your immune system and can cause the cancer to grow much faster. And hers did grow - her doctor is alive. He's 99 years old, and, you know, I've been talking to him for years about this. And he always says, you know, I saw thousands of cases of cervical cancer, and I never saw anything like this. It just grew faster in her body than I'd ever seen. It looked different just to the eye.

So there was something unusual about her tumor. And the cells themselves, like, we know that they have, you know, they have a lot of telomerase, this enzyme that rebuilds the end of your chromosomes. So that's why they don't age. But why her cells did and no other ones did is still a bit of a mystery.

FLATOW: After all these years, what do you find? And this is really sort of -it's like a novel. This book reads like a novel. What do you find the most amazing thing that you discovered?

(Soundbite of laughter)

Ms.�SKLOOT: That's a very hard question to answer. You know, I think in some ways it's - I mean, the story of what happened, what the family went through, is really unbelievable. And many of the moments in their story, when you read it, and as I was researching it, it's like this sort of snowball effect. You just keep reading, and you find, like, yet another moment.

Like, oh, they leaked her medical records to the press, and somebody published them. And then oh, this happened, and that happened. And you read along, going you're kidding. Really?

I mean, as I was writing it, I had that feeling of just more and more. But in terms of just sort of the things that were surprising in terms of the science, you know, you can trace so much of modern medicine back to these moments the HeLa cells were involved in. And just putting together that timeline and laying it out sort of on one huge, big piece of paper that was on my wall was just really astonishing and very hard.

I mean, I could - you could fill many books just with papers written on her cells. So narrowing it down to sort of what's the most important stuff and what is it - how does it all connect to each other was pretty amazing.

FLATOW: Has the family come to grips with this, finally?

Ms.�SKLOOT: Yes and no, and it depends on which family member you're talking about. So some of them - of her children, you know, Deborah definitely came to a point where, you know, she was always sad about the way that this happened and the pain that the family went through. But she definitely got to a point where she was very proud of her mother and what her mother did for science and, you know, felt very lucky to know this stuff. And some of her brothers feel the same way. They're still pretty angry. They're waiting for somebody to give them health care, money, something.

The interesting thing is there's also now new generations of Lacks. So there's grandchildren, there's great-grandchildren, and they're all learning about this now. And they have this great attitude about it. I mean, they're - you know, they're seeing this - they're sort of a new generation, where people didn't talk about these things.

So this is all pretty new to them, and they're just really running with it. Like, they're very proud of their grandmother and their parents, and they just think it's a great story.

FLATOW: It's a great story. It's a great read. It's a great book.

Ms.�SKLOOT: Thank you.

FLATOW: I want to thank you, Rebecca, for taking time to be with us today.

Ms.�SKLOOT: Yeah. Thanks for having me.

FLATOW: You're welcome. And good luck to one of the members of our science-writing community. Good luck to you.

(Soundbite of laughter)

Ms.�SKLOOT: Thank you very much.

FLATOW: Rebecca Skloot is the author of "The Immortal Life of Henrietta Lacks." It says on the cover: Doctors took her cells without asking. Those cells never died, and launched a medical revolution and a multi-million-dollar industry. More than 20 years later, her children found out, and their lives would never be the same.

So, interesting, I highly recommend it.

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