NEAL CONAN, HOST:
This is TALK OF THE NATION. I'm Neal Conan, in Washington. More than 60 years ago now, a doctor in Baltimore sliced tissue samples from an African-American woman suffering from cervical cancer and set off an astonishing chain of events that revolutionized medical research and changed one family forever.
Taken without permission or consent, those cells became the first to thrive outside the human body, an immortal line of cells known as HeLa that played a critical role in research on everything from polio to in-vitro fertilization to gene mapping to AIDS.
But there's another story, the story of that woman, Henrietta Lacks, and her family, which opens critical questions about medical ethics, racism and what happens to the parts of our cells that we leave behind at the doctor's office or in the hospital.
Both stories form the subject of "The Immortal Life of Henrietta Lacks," where author Rebecca Skloot traces not just the impact of the HeLa cells on science, but their unintended legacy for Lacks' family. Please note this is a rebroadcast of an earlier interview, so we're not going to be able to take any new calls in this hour.
But if you'd like to leave the story of your experience using HeLa cells in research of giving doctors the right to use your tissue for research, you can do so on our website. Just go to npr.org and click on TALK OF THE NATION. Later in the program, Patrick Symmes' revenge-fueled mission to catch a bike thief. But first, "The Immortal Life of Henrietta Lacks." Rebecca Skloot joins us from member station WBEZ in Chicago. And it's good to have you with us today.
REBECCA SKLOOT: Thanks for having me.
CONAN: And there's a phrase that comes up towards the end of the book: tissue rights. And it struck me that in 1951, 60 years ago, this is a phrase that would have occurred to no one.
SKLOOT: Oh, absolutely.
SKLOOT: Yeah, in 1951, when they took her cells, we didn't even have the concept of informed consent that we have today. So they were doing research on people, you know, that varied from - you know, taking of tissue samples was absolutely standard, but so was doing things like injecting people with radioactive material to see whether - what kind of harm that would do.
And the type of research being done on people was really vast, and there was no way that they could have guessed in '51 what would someday be possible with these little cells and bits of people.
They didn't know what DNA was. They didn't know what we could someday learn from these samples. So the idea that there would someday be rights associated with cells would have just been baffling to them.
CONAN: And this whole idea that people should even be informed about what this extraction is being used for, or that it's even being done, indeed Henrietta Lacks has a hysterectomy as part of her treatment for her cancer, and nobody tells her.
SKLOOT: Right. She actually didn't get a hysterectomy, but the radiation treatment and the, you know, the chemotherapy that she got basically rendered her infertile. And they - right. They didn't tell her that that was going to happen as a result of the treatment.
And she really didn't know what was being done to her at all. She didn't know much about her treatment, and that was pretty standard at the time, too. They called it benevolent deception. You know, often doctors didn't even tell you what was wrong you. They just treated you and sent you home.
CONAN: And we have to look at that part of the story, and a question you return to again and again throughout the book: Was Henrietta Lacks treated differently than other people were? She was a very poor woman in the charity ward at Johns Hopkins Hospital and getting treatment for free. Was an African-American woman denied treatment that would have been provided to someone wealthier or someone white?
SKLOOT: Right. It's hard to tease out the ways that her treatment was or wasn't different from other people. But she wasn't denied treatment at all. Hopkins was one of the top cancer centers in the country, and she did get the top-of-the-line treatment. And she did this in the public ward, which is where black patients were seen because, you know, this was the era of Jim Crow and segregation. She couldn't have gone into most hospitals.
So she went to Hopkins because it was the only place she could get treated, and that was also the place where a lot of poor people went. If you didn't have money to go to a hospital, you went into these public wards. And the sort of thinking at the time was, well, we're giving you access to medical care which you wouldn't otherwise be able to get. So sort of your payment is that we get to use you in research.
So she did get the top-of-the-line care, but, you know, we now know, looking back at the history of segregation in medical care, that black patients were treated much later in their disease process. They were often, you know, not given the same kind of pain management that white patients would have gotten. And they often died - they died more often of diseases. And those are certainly possibly and probably true of Henrietta. And in some ways, it's still true today.
CONAN: And in some ways still true today. And as we look at the doctors, though, who took her tissue cells and managed to grow them - and this is an enormous triumph for medical research. And there are questions that I think exist to this day: Did they profit from this? Were they made rich by this? Was Johns Hopkins made rich by this?
SKLOOT: Right. That's one of the big - the sore spots in the story for her family. So Henrietta's cells, in addition to being the first ever grown and some of the most, you know, important research done on them, they were the first cells ever commercialized.
And there's now, you know, multi-billion-dollar industry based on buying and selling tissues and cells and patenting genes, and that really all started with her cells.
But in the beginning, the doctor who grew her cells, George Guy, just gave them all away for free. Anyone who wanted to use them in research, he would just, you know, put some in a test tube and send them off.
And it wasn't until several years later that people started actually mass-producing them. There was a factory set up where they were grown, to the tune of about six trillion cells a week and sent out to labs around the world. And that's when they started being actually sold for profit.
And that happened in the beginning, really, just to allow science to move forward. You know, for scientists, growing cells took so much work that they could not - they couldn't get much research done. It was sort of like if you had to build a microscope from scratch every time you wanted to look through it.
And so the selling of cells was really just sort of for the sake of science, and there weren't a lot of profits. But, of course, now that's sort of a different story. But there's no way you could trace how much was actually made off of HeLa cells.
Today, you can - anyone can go online and buy a vial of HeLa cells for about $250, or you can buy products made using them for up to, like, $10,000 a vial. And there's a lot of sort of discussion about, okay, so what of that is HeLa cells?
You know, if you'd taken Henrietta's cancer and put it on a table, it would have died. It took innovation and various, you know, other things to make the cells grow, but obviously, they needed the cells in the first place. So teasing out how much of that was HeLa and how much of it was everything else is pretty tough.
CONAN: There's this extraordinary moment in your book where - this is before the big factory, with the six trillion cells a day. This is a moment where they set up a smaller factory to replicate her cells at the Tuskegee Institute. This is at the height of polio research, and they need these cells to test the vaccine that's going to save, well, many, many, many people's lives.
Yet at the same time, getting back to that racism part of this, upstairs at the Tuskegee Institute, the syphilis experiment is still going on.
SKLOOT: Yeah. It's an amazing moment in the history of science. Here, the Tuskegee syphilis studies are one of the most famous sort of unethical studies done in this country, where black men with syphilis were essentially studied to watch how syphilis killed them from infection to death, without being offered treatment once it was available.
And that was happening on the same campus, yes, right, like, down the hall from where there was this first factory set up to grow HeLa cells. And at the time, no one knew that Henrietta was black. So they didn't know these cells had come from a black woman.
And what's interesting is that the first HeLa production center set up at Tuskegee was actually - the reason it was at Tuskegee was because there was one, a black man who was on the board of the National Foundation for Infantile Paralysis who really fought for it to be at Tuskegee because of the prestige that would come with it, the jobs it would bring to black scientists.
So at the same time you have this very prestigious, you know, cell production factory going on that these cells are going out all over the world and literally saving - helping to save millions of lives, white people, you know, everyone, at a time when, you know, black people couldn't even drink out of the same drinking fountains.
So here you had black scientists at an all-black institution using a black woman's cells to save millions of white people who wouldn't have let them sit next to them, and who had no idea that any - that there was any role that black people were playing in the production of the vaccine.
CONAN: We're talking with Rebecca Skloot about "The Immortal Life of Henrietta Lacks." And we'll start with Greg, Greg on the line with us from Syracuse.
GREG: Yeah, hi, Neal. Thanks for taking my call. I - my two-year-old was diagnosed with brain and spinal cancer in 2007. And while he was on the operating table in Boston on a 14-hour procedure, a fellow came to us and asked us for consent to take the CNF fluid and tumor samples, as well as surrounding tissue samples and use them in what they were hoping would be the largest low-grade glioma brain tumor study in the world.
And my wife's a health care professional, and her first reaction was emotional, and she said absolutely not. And my reaction was we absolutely have to do this because every advance that has come to treat our child and to save his life has come from these studies, from these samples and tests that have gone before us.
And, you know, after this fellow did a fantastic job of, you know, talking through the details and getting rid of the emotion, my wife was willing to sign the consent. It's interesting listening to your guest today, though. I wonder if these cells have been sold or something now.
But the other thing we did, we also - we had a baby on the way, and we cord-banked and packed all of the umbilical cord cells from our next-born and are storing them for the potential treatment for himself, as well as his brother.
CONAN: And he's doing okay? And how is he doing?
GREG: My son Jack just had a scan in Boston last week, and he is still stable. Everything is stable. So we're still in the fight.
CONAN: Nice to hear about that, Greg. But Rebecca Skloot, those two reactions, that seems to encompass everybody's reactions.
SKLOOT: Everybody. Yeah, exactly. That was - and it's interesting that your wife's a health care professional. And I think people often assume that health care professionals are all of the mind of, of course, you must do the research. You must do the research. But, in fact, I find that often, they have the same reaction that your wife did. And one of the things - oh, uh-huh?
GREG: I was absolutely surprised. I was astounded. I just sat there with my mouth agape, and I just thought we'd be on the same page. And you're right. It was just shocking to me that she was not on the same page.
SKLOOT: Yeah. And it is - it's a very emotional thing. I mean, people - and this is something that scientists often are a bit surprised by, that, you know, this is - it's a piece of you. You know, it's a sample that is really considered garbage, in a lot of ways. You know, if you left the hospital, you weren't going to go to them and say, okay, we'd like to take all of our, you know, our son's samples with us so we can throw them away at home.
But at the same time, having someone else save them and do research on them, it does - it hits really close to home.
CONAN: It's a remarkable story. Thanks to Greg for the call. Rebecca Skloot author of "The Immortal Life of Henrietta Lacks" is with us. We'll have more about Henrietta Lacks and her family in just a moment. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION, from NPR News.
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CONAN: This is TALK OF THE NATION, from NPR News. I'm Neal Conan, in Washington. Our guest is Rebecca Skloot. Her book is titled "The Immortal Life of Henrietta Lacks." If you just joined us, it's the story of the tissue taken from Henrietta Lacks without her knowledge or consent six decades ago. Those cells led to incredible breakthroughs in modern medicine. Her family, though, got nothing.
You can read about how Rebecca Skloot's journey to find the Lacks family began in a community college biology class at the TALK OF THE NATION page at npr.org. And while you're there, you can weigh in. If you've used HeLa cells in research, or if you've signed a form to give doctors the right to use your tissues for research, tell us your story. We welcome your comments online, but please note this is a rebroadcast of an earlier interview, so we're not going to be able to take any new calls today.
Let's go next to - this is Geri(ph), Geri with us from Sag Harbor in New York.
GERI: Hi, Neal. Thank you so much. It's a wonderful program.
CONAN: Thank you.
GERI: I have read now - I've just actually purchased this book. I've yet to read it completely. My interest in it is that I did 10 years as an embryologist in in-intro fertilization, fertility work.
Part of my education was culturing HeLa cells and using them and providing them for use in research. They were a wonderful, wonderful tool that really advanced research in medicine light years when it came to eukaryotic culture.
I empathize completely with, you know, the state of medical research and how it applies in racial segregation and racial discrimination. I agree, but I - to be honest with you, I think a lot of this is really being brought about simply because they continue to keep the name HeLa. Had they called it cell Strain No. 27, none of this would have happened, and we wouldn't be as concerned about this as we are today.
CONAN: Rebecca Skloot, HeLa was misidentified for many years under any number of names.
SKLOOT: That's right.
CONAN: But yes, it could be deduced from the first two letters of her first and last name.
SKLOOT: Right. People have asked me, you know, would this happen today? And in some ways, you know, the answer is it happens all the time. You know, people go into the hospital, and they get samples taken for routine biopsies or blood work. Those are often saved and used in research.
And if your name is removed from them, then that doesn't require consent. So people often don't even realize that that's happening, and that those are banked and used for various research projects. But the attachment of her name to the cells is certainly something that would not happen today. Privacy is a big concern when it comes to research on tissues.
But it's interesting. You know, I've been traveling around, talking about this book and the story for - since it came out, you know, almost at the beginning of this year. And, you know, it's interesting. This is the one case we can really talk about, where we can say, okay, this is what happened when, you know, the sort of ramifications of using tissues in research without consent. And we can do that because her name was attached to the cells, which, you know, is certainly, as you said, was sort of an ethical breach, in a sense.
But people are still actually concerned. It's not just the privacy questions. You know, the big issue with regulation cell research right now is that if your identity is attached, it requires consent. If it's not, it essentially doesn't. And a lot of tissue research doesn't require consent because of that. But we're at a time when - I mean, we know that we can go and, you know, use DNA and find out - find a person's identity. We can learn a lot about them.
So the way that tissue research is regulated right now hinges on anonymity, even though a lot of scientists and ethicists - it's you know, it's sort of well-known that, you know, oh, that anonymity, even at this point, probably doesn't exist in the sense that we sort of thought it did. And 50 years from now, who knows what that's going to mean?
And so despite the fact that, you know, she was initially identified, you know, or that her name was released, if her name hadn't been released, I mean, people still do have concerns about the cells being used in research. So it's not just about her identity, but that definitely gave us the ability to talk about her story.
CONAN: I wonder, Geri, when you were working with the cells, were you ever curious about the person who provided this breakthrough?
GERI: Well, I did in-vitro fertilization for 10 years. So I knew who provided them. When I was working with the HeLa cells, the tremendous -I think gratitude is the proper word. Before we had HeLa cells, we couldn't culture human or animal cells. It wasn't possible.
So we could never study cancers. We could never study skin grafting. We couldn't study things that have brought us and saved so many lives today. We just couldn't get these cells to survive in culture. Henrietta Lacks' cells provided us with a tool that never - that we would have waited another 10 years to develop.
CONAN: It sounds like you've got other priorities there, Geri. We'll let you go.
GERI: Thank you. Thank you.
SKLOOT: Yeah, the sense of gratitude is something I hear over and over again from, I mean, scientists and the general public. And it's pretty astonishing the personal response that people have to this story. There are, you know, probably thousands and thousands of scientists who use HeLa cells in their labs, who feel very personally connected to them.
There are so many people out there who, you know, I'm alive - certain people are saying, you know, I'm alive today because I took this drug that was developed using HeLa cells, or my mother is because she did.
And a lot of people assume that scientists are sort unhappy about this story being out there. I think they expect that scientists will be mad that I've sort of outed them about any of this.
And, in fact, what I hear overwhelmingly from researchers is just gratitude. And they say, you know, I've been using these cells in my research my whole career. I feel like I owe a lot of my professional life to them. In a lot of cases, they just say I never stopped to think about where they came from or whether she gave permission. And they're really glad to know.
And I often get calls from scientists, saying, you know, and I worked with this other cell line, you know, MCS-72. Do you know who those came from? And so I think I could probably spend a lot of years trying to find - write books about other cell lines now, too, which I'm not doing.
CONAN: It's interesting. We mentioned that started in a community college biology class. And you were a little befuddled by the scientific terms. You understood right away that there was a great story with Henrietta Lacks. Your penance for finding out this great story is you've had to learn an awful lot about biology.
SKLOOT: Yeah, and I was actually a biology student, initially. I was planning to be a veterinarian. I had no interest in becoming a writer. So my interest in HeLa cells really initially was as a science person.
But at the same time, I just sort of became obsessed with this question of who was she, and did she have any kids, and what did they think about all this stuff that was done with her cells. And then eventually, when I got interested in writing, yeah, I sort of went down that path.
And I think some would say my penance was the - you know, it took me about 12 years to write the book and to do all the research and find everything. So, yeah, I spent many years trying to sort of uncover the story of both the science and the person behind it all.
CONAN: Let's go next to Rita, Rita with us from Charleston.
RITA: Yeah. I'm calling in as both a cancer researcher, as well as a cancer patient. But I want to follow up on what the prior caller had mentioned, and that's even to this day, I want to make sure that it's clear, even to this day, if tissue is collected for clinical purposes and then used for research, and if that tissue is going to be otherwise discarded, it can be used for research without any kind of consent or without the patient knowing that their tissue was used for a cell culture.
And up to this point, up to this last caller, the impression was being given that times have changed. And in that case, as long as there's no patient identifiers being revealed, tissue that is otherwise going to be discarded can be used for research.
SKLOOT: Right, absolutely. And that's - you know, it's a big source of debate right now, you know. There's - I think people for the most part do not know that that's what's going on, and one of the things that's been pretty amazing to me in traveling around talking about the book is just the volume of people who say we're not okay with that.
The general response from the public is this research is important. We want this research to happen. We just want to know. And there's actually, after my book came out, there started to be some studies about people's attitudes towards research being done on their tissues without consent, and overwhelmingly, it matches up with what I've been seeing on my book tour.
There was one study that found that 76 percent of people didn't know that their tissues were being stored for research and that of the people who did know, only eight percent had found out from their health care providers. The rest of them found out in other ways.
And one study, which I think is sort of amazing, is that 76 percent of parents said that they were very or somewhat willing to allow their children's samples to be stored for research if they were asked permission. But if they weren't asked permission, that went down to about 25 percent saying that they would allow it.
So people really are starting to say, you know, we do want you to ask. And we're also seeing a lot of lawsuits that are sort of emphasizing that point, where people are actually suing over their tissues being used without consent.
CONAN: Rita, though, you're in the middle on this.
RITA: Oh, yeah. I can see both sides of it.
CONAN: And where do you come down? Are you - you're obviously the beneficiary from research from Henrietta Lacks' cells, among others, but - at the same time.
RITA: I think as long as the identity of the patient is not revealed, I think it's in the interest of science to go ahead and use the tissue for research, and it would in no way damage or cause any injury of any kind to the patient. But the caveat is that as long as the identifiers are not revealed.
CONAN: And if there were to be commercial exploitation, should that be revealed?
RITA: I don't think it should be. Having said that, I'm not sure about the extent of the commercial exploitation. I understand that there's a variety of places where one can buy tissues or cells for culturing. However, many of those, like the main one, ATCC, is not really for commercial exploitation, it's for maintaining the availability of stocks of these cells, growing them up and maintain availability for researchers to use.
CONAN: Okay. Rita...
RITA: Exploitation, I think, is a very rare event compared to the federal agencies that provide cells for research.
SKLOOT: Yeah, your - I think your position on the use of this as long as their identity is not revealed is one that I often hear from scientists, but not - but there are actually a lot of them who don't feel that way. And I think one of the - where we are right now with this issue is that everybody really feels very differently about this. There are some people who say, if my identity is not going to be revealed, great, do whatever you want with it.
But then, you know, we also know, well, we can actually find out people's identity from these samples. And, you know, it's not like we're doing it routinely now, but someday we could. And, you know, so what does that mean to not reveal someone's identity?
And, you know, there are a lot of people who, their religious beliefs, say they can't have, you know, bits of themselves that are outside of their body when they die because they'll be stuck in this in-between place and not able to go into the afterlife. Or, you know, there are some people who say, well I don't want my cells used for this kind of research.
And so everybody has different feelings about this. And I think that's one of the places where we are right now, as saying, so how do we deal with that, when there are so many different people who have different feelings? And one of the things...
RITA: Well, the possibility is for - if patients do have these really strong beliefs, that they can - let's say prior to a surgery or blood drawn - they can say I don't want these cells to be used...
RITA: ...for research or any other purposes besides the clinical (unintelligible).
SKLOOT: Right. But they have to know that that's happening in order to say that. That's one of the sort of clinchers, is you can't say I don't want you to use my cells if you don't know that's happening in the first place. So that's, I think, where - I think we're probably at a point where we're going - there's going to have to be some disclosure of that, and that people are going to probably, you know, be demanding to know what's done, in a sense.
CONAN: Rita, thanks very much for the call. Good luck.
RITA: All right, thanks.
CONAN: We're talking with Rebecca Skloot about her book "The Immortal Life of Henrietta Lacks." You're listening to TALK OF THE NATION from NPR News.
And you tell a story that includes an extraordinary cast of characters, that includes a con man and a eugenicist. And one of those, though, is a man who is informed that his tissue and his body parts are very valuable, and then does profit from selling that.
SKLOOT: Yeah, that's Ted Slavin. And his story, I think, is an - is fascinating because of what it says about the difference between being informed and not. And, yeah, he was a hemophiliac and his body - he had been exposed to hepatitis B repeatedly during blood transfusions and he - so his body produced a very high level of certain antibodies that scientists were really needing in an effort to develop the hepatitis B vaccine.
And his doctor just told him. He said, you know, you've got this thing that's really valuable and there are a lot of companies that would like to get their hands on this. And so he started his own company and basically sold access to his body - by the vial. He would sell his blood products. And that was how he was able to support himself. Because he would get sick with hemophilia, he would have these attacks - that he couldn't work.
And - but at the same time, he really did want his - this valuable, you know, product that his body produced to do something good for science. So he tracked down this one researcher who he believed would be the most likely to develop the hepatitis B vaccine. And he said - he just sent him a letter one day, that just said, basically, you have access to me for free, you can have my body when you die. You can - whatever you want as long as you use it for developing a vaccine that everyone will potentially benefit from. And that's why we have the hepatitis B vaccine today. And that researcher did use samples from body.
And, you know, and that - one of the - some of the resistance to talking about tissue rights and giving - letting people know when their tissues are being used or when they are commercially valuable, one of the big, historically, the reason that some people have been resistant to that is basically, well, people are going to hold out for profits. They're going to interfere with the progress of science. And we sort of, historically, that hasn't been the case. And, you know, people like Ted Slavin have behaved in that way.
And, you know, one of the things that's tough about this issue is - and the previous caller mentioned this - that, you know, science benefits, it's sort of there's this attitude that everyone owes it to science to donate tissues and let this research be done, consent or not, because everyone benefits. But in fact, of course, in our country not everyone does benefit, because we don't all have access to health care.
So you get situations like Henrietta's family, where this one woman did so much for science yet her family doesn't have access to health care because they can't afford health insurance, so they don't benefit from the advances made using their mother's cells. So, often this idea of universal benefit is really what the discussion comes down to.
CONAN: And let's see if we get one more call in. This is Mary, Mary with us from Portland.
MARY: Hi. I was wondering, you discussed a lot about the issues of using someone's cells for medical research. But when I was reading the book, it seemed like there was a lot of parallel issues for using someone's story, even when people would benefit by reading the story learn stuff. I was wondering if you - how much you had thought about this, particularly early on in your research, when the family was more reluctant to talk to you.
SKLOOT: Yes, a lot. And this is something - yeah, the book is about many different things. It's about the importance of sharing information with the public or scientists being able to talk to people. It's about research ethics. It's also, in a lot of ways, about the ethics of journalism.
You know, I tell the story of many writers, journalists of other kinds who came along before me, and had impacts on the family. And I did wrestle with that quite a bit as I was working on the book. You know, it took me about a year and a half to convince them to even talk to me because of all that they've been through. And along the way, part of how I convinced them to talk to me, was by telling Henrietta's daughter, Deborah, in particular, you know, you can come with me when I do my research. I'm not trying to hide anything from you. And she really wanted to learn about her mother and these cells, so she would. She would come with me.
And because of that, she ended up in a situation she wouldn't have been in otherwise, and some of them - I mean, she very much wanted this information. But in some cases, she wasn't necessarily prepared for what we found. And I really wrestled with that. And, you know, in some certain situations, it became very dangerous for her. I mean, she came very close to having to a stroke at one point during the research process, because of some of the stress involved with some of the information we found. And a lot of how I dealt with that was by putting it in the book. And so that is the reason, in a sense, that the story of Deborah and I is in the book.
CONAN: Mary, thanks very much for the call. We appreciate it. And we want to thank Rebecca Skloot for her time. She joined us from WBEZ, our member station in Chicago. The book, "The Immortal Life of Henrietta Lacks."
Coming up, thieves stole Patrick Symmes' bike in broad daylight in a crowded New York City street. He set out for revenge on any bike thief he could find. He joins us next to tell us what happened. I'm Neal Conan. Stay with us. It's the TALK OF THE NATION from NPR News.
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