Extended discussion with author Rebecca Skloot, author of the best-selling book, “The Immortal Life of Henrietta Lacks.” Johns Hopkins University announced plans this week to name a new research building after 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.
AMY GOODMAN: This is Democracy Now!, democracynow.org, The War and Peace Report. I’m Amy Goodman, as we continue our conversation with Rebecca Skloot, the author of the best-selling book The Immortal Life of Henrietta Lacks. We’re doing the story today because this week Johns Hopkins University in Baltimore, Maryland, has just named a building after Henrietta Lacks. They were there with the Lacks family, members of the Lacks family. And today we’re going to talk about a woman who you may have never heard of, or maybe you just heard about her name because this book has been on the best-seller list for so many years, The Immortal Life of Henrietta Lacks. Rebecca, it’s great to have you stay with us. Can you talk about how you discovered this story?
REBECCA SKLOOT: Yeah. I learned about the cells when I was 16 in a basic biology class. Most people do. My teacher, you know, he talked about the HeLa cells and all the amazing things they’ve done for science. And then he happened to know her name. Most people, actually, at that point in time, knew her as Helen Lane, which was a fake name, basically, that was put out connected to the cells. And he wrote “Henrietta Lacks” on the board in big letters and just said she was a black woman, and that was it.
And I went up to him after class, and I was like, “What else do we know about her? And did she have any kids? And what do they think about all this?” And he just said, “Sorry, no one knows anything.” And I just became obsessed with this question of who this woman was and what—you know, what happened and why we didn’t know. It seemed so just—
AMY GOODMAN: And you were in high school.
REBECCA SKLOOT: —kind of inconceivable to me. I was. I was in high school at the time. And then I didn’t—I didn’t actually become a writer until much, much later. And it was actually the first story I ever wrote in an undergraduate elective writing class, was about her and the fact that I was sort of obsessed with this question. And it just stuck with me ever since.
AMY GOODMAN: So, talk about how you reached out to the family. So, you have almost no résumé here on writing—
REBECCA SKLOOT: Yeah.
AMY GOODMAN: —when you reach out to them, and you have to convince them—what?—that you were writing an article, or that you were going to write a book, on their grandmother?
REBECCA SKLOOT: Yeah, yeah.
AMY GOODMAN: Or mother.
REBECCA SKLOOT: I did. And it was at that point I thought—I thought I was writing a book, really, about Henrietta and her cells. I had no idea what had happened to her family. And, you know, yeah, I called. I tracked down her children, and I talked to her husband and called her daughter Deborah. And Deborah was so excited to talk to me, and she kept saying, “Oh, well, this would be amazing, because then people would learn who my mother was and what she did for science.” But then she said, you know, “But how do I know you’re really a writer and you’re not just pretending to be one to steal my cells?” And I was like, “What?”
And that was the first kind of hint that, wait a minute, something happened to this family. Why would anyone think that I would be pretending to be a journalist. And, you know, then it took about a year to convince her to talk to me, for a lot of good reasons. You know, a lot of people had come along wanting something from the Lacks family at that point, connected to the cells, particularly white people, and it had never worked out well for them. And so it took a long time for me to win her trust and sort of get her to go on this journey with me, which she wanted to do but was sort of afraid to do.
AMY GOODMAN: Well, talk about the history of medical experimentation in the black community. For example—and you had to do a lot of work and research for your remarkable book The Immortal Life of Henrietta Lacks. For example, the Tuskegee experiment.
REBECCA SKLOOT: Yeah, there’s a long history of black people being used in research without their consent in this country. And one of the most famous examples of that is the Tuskegee syphilis studies, though it had been happening in the slavery era, you know, and beyond. And the Tuskegee studies were sort of one of the most unethical things, I think, that’s probably happened in science in the United States. Hundreds of black men were essentially studied. They had syphilis, and they were studied to watch how syphilis killed you, from infection to death, and they weren’t offered treatment even when treatment was available. So, at a certain point, you could have cured this with antibiotics, and they weren’t given the option and didn’t know that they were part of this experiment. And so, it wasn’t—it was at the end of that. There was actually a lot of press surrounding that. And it did a tremendous amount of damage to trust within sort of, you know, black communities when it comes to science and medical—you know, getting medical care. So that’s just one in a long line of sort of stories in history. And Henrietta’s story has been that within certain areas where people know about her, like in East Baltimore around Hopkins. It’s sort of been oral history passed through black communities as part of why it’s hard to trust science.
AMY GOODMAN: So, take us back to the early 1950s. Take us back to Henrietta Lacks feeling sick and going to the doctor.
REBECCA SKLOOT: Yeah, so, Henrietta—one of the most amazing things to me about this moment is that Henrietta actually knew there was something wrong. She just sort of sensed it. And she actually found this tumor herself, on—right on the outside of her cervix, and went to Hopkins and just sort of went in and said, “I have this lump, and you need to—it needs to be looked at.”
And in that moment, you know, this—she went to Hopkins because it was the only place where she could go as a black woman. This was the era of segregation. So, there were colored wards and, you know, the white wards in hospitals, and most places wouldn’t actually—didn’t have a colored ward, so she couldn’t even go. And the thinking at the time was sort of, you know, the people who ended up in what they referred to as the public ward were either black or they were poor, and they couldn’t afford care. And the thinking was, “Well, we’re giving you free medical care; as payment, we get to do whatever we want with you, essentially.” And so, there was a lot of research that was conducted in these wards that people didn’t know about at the time.
And so, Henrietta showed up. She ended up going under anesthetic to get this biopsy of her cervix. And that’s when this doctor just took a little extra piece and put that in a dish and sent it to George Gey, who was the head of tissue culture research and had been trying to grow cells for decades.
AMY GOODMAN: And what happened then?
REBECCA SKLOOT: Then they never died. Yeah, so, her cells—
AMY GOODMAN: And most cells die?
REBECCA SKLOOT: They had been able to keep cells alive—pardon? No, well, so, they had been able to keep cells alive for maybe 24 hours in the past, but hers just—not only did they not die, but they began doubling their numbers every 24 hours. So they just grew with this incredible intensity that no one had ever seen before. And then, immediately, George Gey started telling other scientists who had been trying to grow cells, and they all said, “Can we have some?” And he would give them to them, and they pretty quickly spread around the world this way, all while they were actually spreading in Henrietta’s body at the same time. And she died very, very quickly after.
AMY GOODMAN: Why didn’t the cells die?
REBECCA SKLOOT: Yeah, this is a question that had been asked many times, and up until very recently the answer was we didn’t really know. They thought maybe it was because she actually had syphilis, and that can cause cancer to grow more rapidly. So, there were sort of questions about whether that was the cause. But earlier in the segment we talked about the fact that the HeLa genome had been sequenced and posted online. One of the things that came from that is that scientists were able to identify why her cells grew so fast, finally, which is that she had the HPV virus, which is a very common sexually transmitted disease. And the way HPV causes cancer is it inserts itself into your genome, which is, you know, 3 billion letters that sort of make up the alphabet of all your genes. And it’s pretty random where it lands and inserts itself, and it sort of scrambles your genes a bit. And depending on where it lands, it can cause cancer or not. And of the 3 billion places where that virus could have landed in her genome, it happened to land sort of on one of the most aggressive tumor genes that it could have. So it just turned on her cancer in this almost like hyper-speed way. And it was literally a one in 3 billion chance that it would have happened in that way. So, that is now what we know, and it was from this genome that we got that information.
AMY GOODMAN: So, who was Helen Lane?
REBECCA SKLOOT: Nobody. So, Helen Lane was a made-up name. So, in the '50s, when the cells grew, they started contributing the science immediately. And the media got interested, and a reporter went to Johns Hopkins and George Gey and said he wanted to write about this woman, you know, who the cells came from. And Hopkins at that point said, “Maybe not a good idea to release her name.” You know, there weren't the same privacy laws then, but I think there were questions about protecting her privacy and also about—you know, no one knew about the cells. The family didn’t know. And so they released this name Helen Lane, or someone did connected to Hopkins. And then there was a lot of mythology around that. There was a while where people thought it was Hedy Lamarr and basically anyone whose name was H-E-L-A, that would have been new names, but—
AMY GOODMAN: Who was an inventor and interested in science herself.
REBECCA SKLOOT: Yeah.
AMY GOODMAN: So that’s interesting.
REBECCA SKLOOT: Yeah, yeah, which is—I love that part of it. But Helen Lane stuck. And the story was that she was a white woman. That was often the story that got—that got sort of passed down. And some people said she was George Gey’s assistant. And none of that was true.
AMY GOODMAN: Why didn’t George Gey, when he saw how remarkable this was, these replicating cancer cells—why didn’t he tell Henrietta Lacks at the time, say, “We’ve discovered something amazing”?
REBECCA SKLOOT: Yeah. I mean, that’s a very good question. And, you know, one part of that answer is that George Gey actually never had contact with her. So, he was the scientist in the lab, you know, down the hall, who was growing cells, and the cells came to him in a dish with, you know, just like some—this abbreviation on them. He knew her name. He was able to get access to her medical records to learn about her if he wanted to. But, you know, he was getting cells from anyone who came into the hospital, nearby hospitals, his friends, his family, and so they were all just cells. And that’s often the way that science works. By the time, you know, the cells or the genes are in a laboratory, they’re no longer connected to a person. And that was sort of one of my—one of my intentions in writing this book was to sort of bring these things together and say, “Look, cells and genes are used in all research, so much research now, and it’s pretty easy to forget that they came from a living, breathing person, and that it’s important to keep those—both of those stories in mind.” But yeah, he just—it would have never crossed his mind. It wasn’t something that people did. But also, you know, he just didn’t ever have contact with her.
AMY GOODMAN: So, talk about the journey you went on with Henrietta’s daughter. What did you need to discover about Henrietta and her family?
REBECCA SKLOOT: Well, everything and, you know, much more than I expected, going in. You know, I really did think I was just writing about the cells. And then, once I heard how afraid her daughter was, and realized something had happened to her, I understood that I needed to figure out why she was so afraid. And that was what opened up this whole other story, that I couldn’t have sort of imagined was there, that her children were used in research without their consent in the ’70s. You know, their medical records were released to the press and published. They had this person come along pretending to be a lawyer, who claimed he was going to sue Hopkins, who ended up suing them. And they had just had so many things happen to them.
And in order to understand—to sort of win Deborah’s trust, I needed to understand that and learn her story. But also, it was clear to me, she didn’t know anything about her mother and desperately wanted to. And I sort of realized that if I could find out who Henrietta was, that sharing that information with Deborah would help her trust me, because, in the end, we both just wanted the same thing. We were sort of the two people in the world who were obsessed with this question of who is Henrietta. And it took a while for her to believe that that was really what I was after.
AMY GOODMAN: So, where did you go?
REBECCA SKLOOT: And so I would go and—
AMY GOODMAN: And what trees did you shake to get information?
REBECCA SKLOOT: Yeah, so, initially, the first step in that was that I went to this little town called Clover, Virginia, which is where Henrietta grew up, and I tracked down her cousins and her best friends who were still alive. And I would just get them to tell me stories about her and anything I could to kind of start to bring her to life. And then I would call Deborah, and she would not answer the phone, because she was screening her calls and didn’t want to talk to me. And I would just leave these messages on her answering machine. And at that point, you know, this is an actual machine, and she would be sitting there next to the machine listening. And I would say, you know, “Hey, I just talked to your mom’s cousin Cliff, and he told me this great story about your mom.” And then I would just tell these stories into the answering machine. And that went on for—off and on for a year, before she basically couldn’t contain herself anymore. It was like, “OK, fine. I want to know these things. I want to go on this journey with you.” And she just made me make these promises: You can never hide anything from me, and you have to, you know, tell the world her name was Henrietta Lacks, not Helen Lane, and learn about her sister, who had died young, as part of this whole story, and who Deborah didn’t know.
AMY GOODMAN: Explain how that was part of the story.
REBECCA SKLOOT: Yeah, so, when Henrietta died, she had five kids. And there was—the youngest was in diapers, and the oldest was 16, so it was a big range. And her second child, Elsie, was born disabled. She was deaf. She couldn’t speak. She had developmental issues that really left her sort of like a child throughout her life. And she was institutionalized when Henrietta got sick. And where she ended up was in a place that was known as—it was called the “Home for Crazy Negroes.” And it a pretty awful place to be.
AMY GOODMAN: The “Home for Crazy Negroes”?
REBECCA SKLOOT: Yeah. This was—you know, being in a mental institution anywhere in the—as anyone in the United States in the '50s was not a very pleasant thing. But being a young black girl who was put into a mental institution at that time was pretty awful. And it turned out that learning about her story was part of what Deborah really wanted and needed and part of—you know, we found out a lot of pretty difficult information. She, too, was used in research without her knowledge and without the family's knowledge. And so it was a part of the story. Deborah didn’t know what had happened to her. But she just always suspected something bad happened in this institution. And it had. And she ended up there because of Henrietta’s illness.
And, you know, the reason all of this, to me and to Deborah, was important in the story is that it’s—so many things happened to her children after her death. They were abused by the woman who ended up raising them. It was just so much. And all of that was part of what happened when the family lost Henrietta and the world got those cells that everyone benefited from. And so, for me and for Deborah, it was putting these stories together and saying, “Look, this is what it meant to lose this woman and to gain these cells.” And so, that was part of the journey of finding her sister, was pulling that piece of the story together.
AMY GOODMAN: And so, what you got from—what the world got from these cells, explain again what happened to these cells, how many lives it saved, where these cells went, how many diseases—
REBECCA SKLOOT: Yeah.
AMY GOODMAN: —and the research into them it affected.
REBECCA SKLOOT: Yeah, I mean, in some ways, just it’s impossible to measure that. You know, the cells themselves were—they were used to help create the polio vaccine. They went up in the first space missions to see what happened to human cells in zero gravity. They were the first cells ever cloned. The first genes ever mapped were hers. They helped develop our most important cancer medications, like vincristine and tamoxifen, which I’m sure many people listening and watching this have taken. In vitro fertilization. There really isn’t a person out there who hasn’t benefited from these cells in many ways. And just every—basically, any disease you can mention, some research has probably involved HeLa cells.
AMY GOODMAN: So, Rebecca Skloot, now talk about taking your research—you’re writing your first book, which is like one of your—coming out of one of your first articles or pieces for a college paper—
REBECCA SKLOOT: Yeah.
AMY GOODMAN: —going to Johns Hopkins, and how they responded to your questions. And what were those questions?
REBECCA SKLOOT: Yeah, you know, so, at Johns Hopkins, I was wanting to know just the history, you know, and I—it’s interesting. People often assume that the world of science didn’t want this story out there, that there was something that—you know, “Oh, this makes us look bad, or we’re trying to hide it.” But for the most part, you know, the vast majority of scientists out there just didn’t know. And they learned in school that the cells came from Helen Lane. And most people, you know, when they learned that that wasn’t the actual story, scientists were pretty open about talking about it and thinking that the information needed to be out there. At Hopkins, I spent quite a bit of time talking to the scientist who did research on the kids in the '70s about why he didn't get consent. And he was very transparent about that. He was just like, “We just didn’t at the time.” And, you know—
AMY GOODMAN: [inaudible], Rebecca?
REBECCA SKLOOT: —and Hopkins never tried to—pardon?
AMY GOODMAN: What was that research?
REBECCA SKLOOT: Say that—oh, so, this was—so, in the '70s, this was kind of the early days of gene mapping. And basically, they went to the kids because they wanted to look at their genes, compare those to the HeLa cells, to sort of isolate what of that—you know, to find some of Henrietta's genes in there, as part of developing markers for finding the cells. So, one of the things that happened was that there was this big contamination problem, and HeLa cells, it turns out, are so powerful that they can—if you touch a dish of HeLa cells and then touch another dish where you’re trying to grow other cells, HeLa cells will just take over. And so there was a bit of a mess in science where, without realizing it, scientists had been growing HeLa cells, thinking they were other things. It’s sort of a long story. But part of what they wanted was, essentially, to be able to come up with a test to look at some of these cells and say, “OK, is this HeLa, or is this something else?” So that was one thing. But then they also realized, “Oh, if we look at her kids’ genes, maybe we can learn more about the cells themselves.” So, it was all sort of part of all that.
And when I asked him, it was not standard practice to go to people and take samples from them for research without consent, at that point, which is what he did. And when I asked him about that, you know, he said that—he said, essentially, “I hope you can convince those people that nothing bad happened.” And in this moment when I heard him say “those people,” it was very clear to me that there was a racial component here. He was, you know, a white scientist who was raised in the segregated South. And we talked about this quite a bit, and it seemed—you know, he had gotten consent from quite a few of his other research participants. And I think that there was an element of, if the Lacks family maybe had been white, had been more—had been educated, their experience might have been different in this moment. So, to me, that was a sort of essential piece of the story. And he—
AMY GOODMAN: And on what pretext did he call them in? I mean, what did they think they were giving?
REBECCA SKLOOT: Well, so, yeah, so he didn’t. He actually sent one of his postdocs to call them, and she was a young researcher from China, very thick accent, and she didn’t know that the family didn’t know about the cells. So she called them up. He had instructed her, “Just go find the family and get samples.” And, you know, being a dutiful postdoc, she did, just called them up. And Henrietta’s husband had a fourth grade education. He didn’t know what a cell was. He also spoke with a very thick Southern accent. And between the two of them, neither of them—there were so many communication issues, they didn’t understand each other just on a sort of basic English level, to some degree, but also, like, she spoke science, and he didn’t. So, she said, you know, “We want to take samples from your kids. We want to look at their HLA markers to compare those with the HeLa cells—like things nobody—most people wouldn’t understand. And what he heard was, “We’ve got your wife. She’s alive, or part of her is alive, in a laboratory, in a cell,” like a prison cell, which was the only kind of cell he’d ever heard of.
And so, he thought they were calling to say, “We need to test your kids to see if they have the cancer that killed Henrietta,” when in fact they weren’t saying that at all. And the scientists never knew that he didn’t understand. And so, from the family’s perspective, they were going to the—they were getting tested for their own medical reasons, and then, just weirdly, never got the results. So they would call Hopkins and say, you know, “We’re calling for the results of our blood tests. Where are they?” And they just were like, “We don’t have record of any tests.” And so, it was this moment of sort of communication breakdown, as well as just someone who doesn’t know about science being confronted with science without the scientist explaining it to them. And then there’s these many decades of consequences from that moment that were pretty hard for the family.
AMY GOODMAN: And so, talk about Johns Hopkins’ acknowledgments as you’re putting together this story.
REBECCA SKLOOT: Yeah. Yeah, so, Hopkins—I mean, you had asked if they sort of tried to keep this story under wraps. And they didn’t. I think, really, Hopkins didn’t know the extent of the story until after the book came out, to some degree. They didn’t know the children really were used in research without their knowledge. So there was a lot that the sort of—and we talk about Hopkins as if it’s a one thing. But people at Hopkins really didn’t know. And when the book came out, you know, they began these efforts to sort of acknowledge the family and bring them into the discussion, so they started this thing called Microscope Day, where any Lackses and their friends would go in and get to see the cells and learn about the cells. They launched a lecture series in her honor to talk about sort of ethical issues and outreach in communities. And so there have been things along the way. There’s a scholarship program for a local East Baltimore student.
And since the '80s, there were several moments in the story of HeLa cells when Hopkins talked about doing something like naming a building. So, the first was in the ’80s. And every time that happened, they got scared off by threats of lawsuits and other things. So there were—had been people who've come along in the Lacks family story, in some cases pretending to be lawyers, in some cases actually being lawyers, saying, “We think we can, you know, sue Hopkins or someone over this.” And that coincided in the past with moments when this happened, and then Hopkins would sort of back down and not do it. So, the fact that they’ve finally done it, and done it with, you know, Jeri and several other family members, they’re really kind of saying, “No, we want you to do this,” in moments where—you know, even if questions came up from other members of the family. So, the fact that they did this sort of finally, I think—you know, I know Deborah would be ecstatic about this, that there is this public recognition, and then it will be there, you know, for many generations. I think—
AMY GOODMAN: And when you say “did this,” you mean the naming of this building.
REBECCA SKLOOT: The building. Yeah, yeah, the naming of the building.
AMY GOODMAN: And talk about what’s happening—the Henrietta Lacks building at Johns Hopkins, what’s happening in this building?
REBECCA SKLOOT: So, I actually am not sure entirely what the building—what’s going to be in the building. That actually is probably something Jeri actually knows more about than I do. But, you know, I know that there is focus on outreach to the community, you know, building trust. It’s right next to the bioethics institute, which I think is very significant and important. So I think it’s—their hope with this is that the things that will happen in this building will help bridge this gap between the public and science, which is something that’s a huge part of the story of HeLa cells.
AMY GOODMAN: So, what about the financial interests here? Can you talk about whether Johns Hopkins or scientists made money off of HeLa, even if at the very beginning they did not?
REBECCA SKLOOT: Yeah. Yeah, this is a complicated—it’s a complicated issue. So, yeah, George Gey gave the cells all away for free, and, in fact, nearly bankrupted himself funding most of this research connected with it, with the cells. So there was no initial financial gain from it.
The first—you know, now we have all these biotech companies and—you know, that are developed based on selling cells. And, you know, at one point it was also patenting genes, which they’re not doing anymore. And all these—a lot of these biotech companies, you can trace back to one company that started in the '50s just selling HeLa cells basically. And the reason that company formed was that scientists needed someone to just produce the cells for them. So, initially, the scientists were growing the cells themselves, and it took so much time and effort. It would be like having to build a microscope from scratch every time you wanted to look through it. So, they weren't able to actually do the science as efficiently, and so scientists went to a businessman and just said, “Look, if we teach you how to grow this thing and help you set up this company, will you grow the cells and sell them to us?” Which is this kind of like no-brainer business model for someone. And then that company became this enormous thing. And there’s now also nonprofit places where the cells are grown.
And so, yes, there is money, large amounts of money, that have come from the cells in some way, some directly from selling them, but a lot just from the industry that’s grown around them. And one of the things that’s very hard about the money question is pinpointing how much of that was the cells and how much of all these advances that we’ve got came from the cells. And this is often where the conversation ends up, which is, if you’d taken the cells from Henrietta and put them on a table, they would have died. So it took a lot of innovation and human, you know, kind of interaction with the cells to get them to survive and then to do all the research and to do all the developments. And so that kind of ties people up in knots, in terms of looking at where does the money come from.
And the common question is, you know: Has anyone compensated the family? And the answer to that is no. And part of that is because of this concern over setting a precedent and the question of who pays them, how much do you pay them, how do you sort out what they were worth. But also, you know, most people—I mean our cells are often used in research as—the way the laws work now is, as long as your identity is—your name is removed from the cells, and they were taken for some other reason, some reason other than research, like a routine biopsy, those are often saved and used in research, and people don’t realize it. And so, the question of: If we pay—someone pays the family for HeLa cells, what about the millions of other people whose cells are used in research? And who pays them, and how much? And so this is part of why the conversation about money and the Lacks family has often been pretty complicated and not ended up with them getting any money.
AMY GOODMAN: I mean, certainly the company that was set up, that has made a fortune off the HeLa cells—how is it possible that it’s not justified that this family—
REBECCA SKLOOT: Right.
AMY GOODMAN: —that is economically, to say the least, very challenged, does not benefit in any way?
REBECCA SKLOOT: Yeah. Right, yeah. No, absolutely. A lot of people point to that. And that company doesn’t exist anymore. When you trace the lineage of that company, you get to, you know, a lot of other big companies that were then sort of branched off and sold and various things. But, yes, so—and where that kind of tree begins and ends is part of what people look at and go like, “Well, that wasn’t us. That was this other company all these years ago.”
You know, when the book came out, this was a big question for me, of like, obviously, I was a person who potentially could gain from these cells financially and from telling the story. And as I realized what their story was, I didn’t want to be another person who had come along and benefited without doing something. And so I started this foundation. It’s called the Henrietta Lacks Foundation. And it grants—it gives grants to members of Henrietta’s family, but also, more broadly, to people who made important contributions to science without their knowledge and their descendants. So, like the Tuskegee syphilis studies men, their descendants can also benefit from it. And my hope—so, money from the movie has gone in there, and the book.
And my hope was that this would kind of open up a way for some of these companies or people who financially benefited from the sales to give back, in a sense, and without the question of setting a precedent by giving just to the Lacks family directly. And I thought maybe they’d—you know, giving to a foundation that helps with more families than just the one, though it has been very focused on the Lacks family. I sort of had hoped that would happen, but it hasn’t. There have been no donations from any companies, any research institutions. But there have been a lot of donations as a website. Anyone can donate, and people do all the time. But they’re usually sort of individual readers. Individual scientists will often donate and say, you know, “I did my dissertation on these cells. I sort of owe my career to these cells, in some ways, and I want to give back to them.” So, there’s an avenue for it, but it hasn’t happened from any of the companies yet.
AMY GOODMAN: Can you give us an example, another example, outside of HeLa, Henrietta Lacks, outside of Tuskegee, but some of the example of the descendants or the people that your foundation funds, families that were affected, that were experimented on?
REBECCA SKLOOT: Yeah, yeah. I mean, sort of, unfortunately, there’s a enormous number of people who can qualify for this. For the foundation as it is currently, the only people who have benefited are the Lacks family and some members the Tuskegee syphilis studies families. And it’s been more Lacks family than otherwise.
But, you know, in the '50s, we didn't even have the concept of informed consent. So the amount of research that was done without people’s knowledge was just incredibly vast. And there’s—one of the other examples are the—what they call the human radiation experiments, where people all over the United States were used in research looking at what does radiation do to you. There was a lot of concern about, you know, bombs and nuclear war. And so, people were exposed to radiation, in some cases in really tremendous quantities, without their knowledge, for a lot of years. And their descendants would qualify. There were studies where there were mentally handicapped children in an orphanage who were given hepatitis in order to study hepatitis. You know, if they had descendants, they would qualify. There are far more people who could qualify for this, unfortunately, than probably the foundation could even help. But, you know, so it is a pretty broad issue in the United States.
AMY GOODMAN: Years ago, we interviewed Eileen Welsome in New Mexico—
REBECCA SKLOOT: Yeah.
AMY GOODMAN: —the reporter who did an investigation and did just what you did, tracking down, on these radiation experiments.
REBECCA SKLOOT: Yeah.
AMY GOODMAN: And so often they are on people who are disempowered and, more often than not—
REBECCA SKLOOT: Yeah.
AMY GOODMAN: —on African-American families, people who were exposed to radiation to test the effects of it on their body, actually injected—
REBECCA SKLOOT: Yeah.
AMY GOODMAN: —with radioactive materials.
REBECCA SKLOOT: Yeah. Yeah, absolutely. And this is one of the reasons we talked earlier about the issues of trust between minority communities and the sciences and medicine. And this is part of that history. And, you know, it not only is an issue in terms of people being afraid of science, in general, but also not going to the doctor, not trusting—you know, “What is this medication you’re giving me? And is this really helping me, or is this giving me something?” And that’s still something that’s very alive, particularly within the African-American community, is this mistrust. And they won’t—you know, there’s a lot of like refusal to participate in research studies, because you don’t know what somebody is going to give you. And then part of what that does is it results in pretty skewed research information that doesn’t always include, you know, a diverse-enough population to apply to everyone. So this question of trust has a lot of consequences.
AMY GOODMAN: The effect of your book, Rebecca Skloot, as we wrap up, on the medical community and the issues that you raise in The Immortal Life of Henrietta Lacks, how did, overall, the medical community—I mean, you could spend your life now on panels debating with medical institutions—
REBECCA SKLOOT: Yeah.
AMY GOODMAN: —about their responsibility for the people they care for and then gain information from and sometimes profit from.
REBECCA SKLOOT: Yeah. So, you know, I think there are a lot of different ways that the book has kind of become part of the sort of medical world, you know, and it’s pretty amazing to see. You know, at this point, it’s very hard to go to medical school—I mean, let alone high school or college in this country—without reading it. And the way that the kind of future generation of scientists and medical professionals is taking in the story as they’re learning to be doctors and researchers is pretty amazing. You know, I hear from them all the time, saying, “We are a different generation. We are approaching this in a very different way. We’re using this history to inform us.” And I think that that’s—I think we have—it’s yet to be seen what that’s going to mean for science in the future, and I think that that’s a good thing.
I also hear a lot from individual researchers saying, you know, “I have been trying to get African Americans to participate in my research studies for a long time.” You know, one woman who said—she’s working on developing an AIDS vaccine. And she was like, “I’ve been hearing from patients for so long saying, 'No, I won't participate, because you’re going to inject me with AIDS or something else.’” And she was like, “I just thought it was some weird conspiracy theory. I didn’t understand where it was coming from. And understanding the history of that allows a conversation to happen.” She was like, “We’ll bring out the book or mention the story and say, 'Look, I get why you feel that way. It's warranted. I understand the history behind it. And let me tell you why that’s not the case now.’” And that wasn’t happening. And I think that’s really important, too. And, you know, it’s been involved in talks of: Should we change the laws to require consent for all tissue research, which isn’t the case now? And so far that’s not happening. But, you know, so it’s become a part of a lot of different discussions.
AMY GOODMAN: What are you working on now, Rebecca?
REBECCA SKLOOT: I am working on a book that’s about animal research and ethics and our complicated relationship with it. You know, it’s funny. When I started working on this, thinking about a next book, I thought, “I’m going to write something completely different from the first book. You know, you can’t even compare them.” And it’s the same book, in some ways. It’s these—it’s two—the public and this world of science that sort of don’t understand each other, don’t trust each other. There are a lot of really negative consequences to not being able to have a conversation that is factually accurate about sort of where research is right now. And, you know, for everyone who’s benefited from HeLa cells in, you know, 10, 20, a hundred ways, they have benefited thousand times more from animal research and also don’t understand it or don’t know that. And people—it’s just not something we talk about. So, I, in part because of a lot of experiences that I had when I was working in the sciences, have gone back to really look at what is animal research today, what does it look like, how has it changed, how has it not, what needs to change and what are the consequences of all of these big ethical questions and the public’s lack of involvement with the issues.
AMY GOODMAN: Well, Rebecca Skloot, we want to thank you so much for spending this time.
REBECCA SKLOOT: Thank you. Thanks for having me.
AMY GOODMAN: Thank you. Rebecca Skloot is the author of the best-selling book The Immortal Life of Henrietta Lacks. This week, Johns Hopkins University named a building after the woman who unknowingly gave them her HeLa cells, known as the “immortal cells,” HeLa for the first two letters of Henrietta’s first and last name, Henrietta Lacks.
This is Democracy Now! To see Part 1 of our discussion with Rebecca Skloot, as well as with Henrietta Lacks’s granddaughter Jeri Lacks Whye, who was involved with the naming of the building for her grandmother, go to democracynow.org. I’m Amy Goodman. Thanks so much for joining us.