LULU MILLER: Hey-oh, Lulu here. This is Radiolab. Today we have a story that starts in a very private moment. A woman alone in her bathroom, making a quiet, startling discovery about her own body. But that tiny personal moment will keep growing and growing and growing until it becomes so big that it has impacted the lives of everybody listening right now. And all that without the woman ever knowing the impact she had. It's a story that we first aired over a decade ago, but it is just as relevant today as questions about bodily autonomy circle with renewed force. So here we go: The story of one of the most important people in the history of medical science—who was almost erased from the record.

[RADIOLAB INTRO]

JAD ABUMRAD: Hey, I'm Jad Abumrad.

ROBERT KRULWICH: I'm Robert Krulwich.

JAD: This is Radiolab.

ROBERT: The podcast.

JAD: And today on the podcast, the story of ...

ROBERT: I've been wanting to do this story for ...

JAD: Oh, forever.

ROBERT: Forever?

JAD: Forever.

ROBERT: Like two years ago, I think.

JAD: Oh, longer than that.

ROBERT: Yeah.

JAD: It's a story that comes from a friend of mine, Rebecca Skloot.

REBECCA SKLOOT: You want me to talk? Make noise.

JAD: That's her.

REBECCA SKLOOT: Like, we can move me closer from ...

JAD: And she has been wanting to tell this story ...

ROBERT: Even longer!

JAD: Since she was in the womb! You know, I mean, she's been researching this story for 10 years.

REBECCA SKLOOT: Hello? Hello. Hello.

JAD: Because it is an amazing story—and confusing at times—about a tumor that begins to expand ...

REBECCA SKLOOT: Okay.

JAD: ... and never stopped. The story begins in 1950 in Baltimore, with a Black woman, who for much of this story won't have a name. She's in her bathroom, and she discovers pretty much all on her own that she has cancer.

REBECCA SKLOOT: It's all—it's a little bit of a mystery how she initially knew this, but she knew it was there. A knot, she called it. She had told her cousins for a while that she thought there was something wrong with her, with her womb, and she climbed into her bathtub and she slid her fingers up inside of her cervix and found this lump.

JAD: Chapter one.

REBECCA SKLOOT: First, she went into her local doctor.

HOWARD JONES: By chance, I happened to be an attending at that time.

JAD: The guy she eventually ended up seeing, at Johns Hopkins University, was this fellow, Dr. Howard Jones.

HOWARD JONES: I'm 98. Next month I'll be 99.

JAD: Wow.

HOWARD JONES: [chuckles]

JAD: So when she came in to see you, can you tell me anything about what she was like?

HOWARD JONES: Well, she was a ...

JAD: You don't remember anything.

HOWARD JONES: No, I really don't.

JAD: But you remember her tumor, right?

HOWARD JONES: Oh, absolutely. I never saw anything like it before or after.

REBECCA SKLOOT: And it didn't look like a normal tumor. It was—it was deep purple and ...

HOWARD JONES: About as big as a quarter.

REBECCA SKLOOT: And sort of shiny.

HOWARD JONES: Very soft. That was another thing about it. On examination ...

REBECCA SKLOOT: Slightly raised.

HOWARD JONES: When you touched it, you might think it was red and Jell-o.

REBECCA SKLOOT: There was something very strange about the way it looked.

HOWARD JONES: There was something weird about it.

JAD: So doctors took a sample.

REBECCA SKLOOT: Yeah. So they would cut off these little teeny tiny pieces.

JAD: Really small.

REBECCA SKLOOT: Teeny tiny.

HOWARD JONES: A bite or two.

REBECCA SKLOOT: They would take a piece ...

JAD: Put it in a tube.

REBECCA SKLOOT: And one would go to the lab for diagnosis.

JAD: And in this case, since it was Hopkins ...

REBECCA SKLOOT: They would take an extra piece and give it to a man named George Gey

JAD: Two. So George Gey was a researcher who worked at Hopkins. He had a deal with the clinic that any time they got a patient with cervical cancer, they'd give him a tiny piece of the tumor because he was studying cervical cancer. But what he really wanted to do, his main mission—actually, not just his, scientists everywhere were trying to do this, they wanted to find a way to grow human cells outside of a human being.

ROBERT: In a dish.

JAD: In a dish.

REBECCA SKLOOT: George Gey had been trying to do this, working on this for decades.

JAD: And why exactly?

REBECCA SKLOOT: It's sort of like—it's sort of like having a little tiny bit of a person in a—in a lab that's detached from them so that you can do whatever you want with them.

JAD: Hmm.

REBECCA SKLOOT: You know, you can't bombard some person with a bunch of drugs and just wait to see how much they can tolerate before their cells all explode. But you can do that in cell culture, so ...

JAD: Oh, so this is like—this is like the basic thing you need to study human biology.

REBECCA SKLOOT: Mm-hmm.

JAD: You need cells in a dish.

REBECCA SKLOOT: Yes.

JAD: Problem was any time they tried to grow human cells in a dish ...

[knocking]

MARY KUBICEK: My dog ...

JAD: They would die.

MARY KUBICEK: Yeah, they died.

JAD: This is George Gey's former lab assistant.

JAD: Can you just tell me your name? You know, my name is so-and-so.

MARY KUBICEK: My name is Mary. I'll put my maiden name in there.

JAD: Oh sure.

MARY KUBICEK: Toy Kubicek.

JAD: Mary lives just outside of Baltimore, about an hour from where she used to work with George Gey.

MARY KUBICEK: Oh. This is it. This is Dr. Gey.

JAD: And she showed me some pictures.

MARY KUBICEK: And he's sitting at—at a microscope.

JAD: Look at him. He looks—he's—he seems like a really big guy, like a really tall guy.

MARY KUBICEK: He was a big guy.

JAD: At least 6'5" judging from the picture.

MARY KUBICEK: Yeah, he was.

JAD: And in every slide that she showed me, he had kind of a crazy smile on his face.

JAD: Like he's got a—like, he's having a time.

MARY KUBICEK: A big bear of a man is what I always thought of.

JAD: Oh yeah.

JAD: In any case, Mary says they were completely stumped at why the human cells always died.

MARY KUBICEK: He was ...

JAD: But they just did.

MARY KUBICEK: Yeah.

JAD: So on the day that George Gey walked in, handed Mary a tube with a little chunk of a nameless woman's cervical cancer inside ...

MARY KUBICEK: I knew nothing about her.

JAD: ... no one expected anything.

MARY KUBICEK: No. He was doing the—well, he probably was ever hopeful. But, you know, I was eating lunch and I thought, "Oh, the heck with it, You know, it's not gonna grow. I'm gonna finish this sandwich."

JAD: Yeah.

MARY KUBICEK: And that's what I did.

JAD: Three.

MARY KUBICEK: Then I went in and ...

JAD: She gave the cells some food.

MARY KUBICEK: Did my usual.

JAD: Turned on all the machines and left. Came back the next day. They hadn't died. So she came back the next day. And they were growing. And then the next day, still growing.

MARY KUBICEK: They just kept plugging along.

JAD: And the next!

REBECCA SKLOOT: They grew a lot.

JAD: Rebecca says they doubled in size ...

MARY KUBICEK: Yeah. All of a sudden, you know, I—I kept transferring them, and making more tubes and transferring them, making more tubes and transferring. They were very reliable.

REBECCA SKLOOT: And stronger.

MARY KUBICEK: They just kept plugging along.

JAD: Meanwhile, the woman who had spawned all these cells died.

REBECCA SKLOOT: Right. Officially, she died of uremia, which is like toxicity of the blood because she wasn't able to get rid of the toxic waste that usually goes out in your urine.

MARY KUBICEK: Plugging along, plugging along ...

JAD: But not her cells.

[ARCHIVE CLIP: And to tell us this story, it's a privilege to introduce Dr. George Gey.]

JAD: Wasn't long after that George Gey appeared on TV, holding in his hand a little bottle.

[ARCHIVE CLIP, George Gey: Now let me show you a bottle ...]

MARY KUBICEK: Plugging along ...

[ARCHIVE CLIP, George Gey: ... in which we have grown massive quantities of cancer cells.]

JAD: So did you wanna look at the photos?

JAD: You can't really get a sense of how aggressive this tumor was until you go to the Hopkins archives and look at George Gey's pictures and videos.

JAD: Okay, This is the film can here. The HeLa Cell film.

JAD: Then it hits you.

[ARCHIVE CLIP: These are enlarged 10,000 times ...]

JAD: Oh my God.

JAD: Swirling hurricanes of cells.

JAD: Just like thousands of little pods.

[ARCHIVE CLIP: Some small and some very large.]

[ARCHIVE CLIP: Clumped together.]

MARY KUBICEK: Kept transferring them and making more tubes.

[ARCHIVE CLIP: See them under the microscope.]

JAD: Looks like something has just exploded.

MARY KUBICEK: Plugging along...

[ARCHIVE CLIP: Undergoing division ...]

JAD: That's amazing.

MARY KUBICEK: And they just kept plugging along.

[ARCHIVE CLIP: It keeps getting bigger and bigger.]

REBECCA SKLOOT: Stronger.

[ARCHIVE CLIP: It's indestructible. It's indescribable. Nothing can stop it.]

REBECCA SKLOOT: Why hers just sort of took off and grew and the other ones that they had tried before didn't, is just a little bit of a mystery. Nobody really knows.

JAD: Four. Nonetheless, George Gey knew what he had. This new cell line was what they'd all been waiting for. So early on, right after this woman died, George Gey sent Mary back down to get more cancer cells from the corpse.

MARY KUBICEK: Oh, he sent me down to the morgue. Yeah.

JAD: Really?

MARY KUBICEK: Oh yeah. So I went down there and the coroner, I don't know who he was. Dr. Gey was there too. And they were standing down at her feet, sort of.

JAD: Yeah. Meanwhile, she's like ...

MARY KUBICEK: She's lying out there, she's already open. I got some samples. Coroner would take 'em out and give 'em to me.

JAD: What'd she look like?

MARY KUBICEK: I couldn't look at her face. I couldn't look at her. The only thing I looked at were her toes and they had chipped nail polish on 'em. And that was really like, "Oh, this is a real person."

JAD: What was it about the nail polish that hit you?

MARY KUBICEK: Oh, 'cause it was chipped because you know that she hadn't been able to take care of her nails for a long time if they got chipped like that. And it showed that she was proud of herself. Not everyone wears nail polish on their toes.

JAD: Yeah, yeah.

JAD: Over the next several months, while this woman's body lay decomposing in the ground, George Gey and Mary produced hundreds of thousands of her cells. Her tumor cells. And he named them the HeLa strain.

ROBERT: Hela?

JAD: Like HeLa, H-E-L-A.

ROBERT: Uh-huh?

JAD: No one would actually know why he had named them that for about two decades.

ROBERT: Hmm.

JAD: But what he did with these cells, you know, would—would be unusual nowadays. Like, if somebody now found a cell that was special, they'd run off to the patent office and then sell it to Merck for a billion bucks.

ROBERT: Pfft.

JAD: But George Gey?

MARY KUBICEK: He just passed them out freely.

JAD: Didn't try and make any money off of it.

JAD: He was just ...

MARY KUBICEK: Because it was a nice, nice new thing that could help science.

JAD: Mary says that George Gey began to send HeLa all over the world.

MARY KUBICEK: Yep.

JAD: And pretty soon she was in hundreds of labs.

REBECCA SKLOOT: And, you know, this was in the midst of the polio epidemic.

[ARCHIVE NEWS CLIP: This is the season when polio is at its worst.]

JAD: We're talking early '50s, right?

REBECCA SKLOOT: Yeah. So there's 1951-52. You know, schools are being closed, kids are being kept inside.

[ARCHIVE CLIP: To this cruel disease, medical science still has no complete answer.]

REBECCA SKLOOT: There was this enormous effort to develop a polio vaccine.

JAD: Problem was, in order to develop a vaccine, you had to have enough polio virus, you know, enough quantity to be able to study it in a lab. And they had no way of making enough.

ROBERT: So what do they do?

JAD: Well, one of the guys that Gey—one of the guys that Gey had sent the cells to?

ROBERT: Yeah.

REBECCA SKLOOT: This collaborator friend of Gey's.

JAD: Discovered something kind of amazing. Which was that polio loved the HeLa cell. Put polio inside a HeLa cell, HeLa would copy, and in the process make more polio.

ROBERT: So it's the super Xerox cell. No matter what you wanna do, it's like, "Make a copy, make a copy, make a copy."

JAD: Yeah. So now they had a way of making polio.

REBECCA SKLOOT: HeLa could just be a polio factory.

JAD: And so the government made a factory.

REBECCA SKLOOT: At the Tuskegee Institute.

JAD: A real one.

REBECCA SKLOOT: Literally a factory. So they had these big, you know, stainless steel vats of culture medium that were sort of rotated constantly. Autoclaves for sterilizing all their equipment. A row with, you know, four or five microscopes, crazy Frankenstein-ish gizmos. They had this machine that was like an automatic cell dispenser, and it had this sort long mechanical arm. It'd squirt a certain amount of this culture medium filled with HeLa cells into a tube.

JAD: Wow. This is like the beauty of industry right here.

REBECCA SKLOOT: Yeah, it is. Absolutely.

JAD: And the cells that were produced at this factory, she says, were used to test the polio vaccine.

[ARCHIVE CLIP: A potent vaccine to prevent the dreaded disease.]

REBECCA SKLOOT: The tests that they were doing, it was the largest field trial ever done. At its peak, the Tuskegee HeLa Production Center was producing about six trillion cells a week.

JAD: Wow.

REBECCA SKLOOT: Which is kind of inconceivable.

JAD: But that was actually only the beginning, says Rebecca, because this factory led to an even bigger one. It was for profit.

REBECCA SKLOOT: Right.

JAD: And that second factory ...

REBECCA SKLOOT: Was the first time any human biological material was commercialized.

JAD: So this was the first biotech company?

REBECCA SKLOOT: Yeah, basically.

JAD: Okay. But when they first started mass producing HeLa ...

REBECCA SKLOOT: Mm-hmm?

JAD: ... what sorts of things were done to these cells? What sorts of problems were investigated?

REBECCA SKLOOT: Like, anything you can imagine. So they infected HeLa cells with every kind of virus—hepatitis, equine encephalitis virus, yellow fever, herpes, measles, mumps, rabies, whatever, like you just—any—any vaccine. And this was just an—just a revolution for scientists. There was research on chemotherapy drugs. HeLa cells went up in some of the first space missions.

JAD: Really?

REBECCA SKLOOT: Yeah. So they were ...

JAD: HeLa went into space?

REBECCA SKLOOT: HeLa went into space, which every time I hear, I think like "HeLa ... in ... space..." [laughs]

JAD: [laughs] And why, I mean just 'cause?

REBECCA SKLOOT: The premise was to see what happens to human cells in zero gravity. You know, if we're gonna be sending people up into space, what's gonna happen to them up there?

JAD: Yeah.

REBECCA SKLOOT: So HeLa went up before any humans did. And then she eventually went up. She—the cells. There was ...

JAD: Actually, that was an interesting little slip up there.

REBECCA SKLOOT: Yeah, I know. [laughs]

JAD: Okay, so let's actually skip forward in the story to the point where that—that slip up you just heard, that pronoun confusion gets really personal.

LULU: That's right after this break.

LULU: Lulu. Radiolab. So just before the break, we heard our wonderful reporter Rebecca Skloot slip up a bit and call a cluster of HeLa cells "she."

JAD: Okay. It's the late '60s.

ROBERT: Mm-hmm.

JAD: And HeLa has led to a revolution in science. And now there are hundreds of cell lines, not just HeLa, but hundreds. And somewhere along the way, scientists discover that HeLa is so aggressive that she's actually been contaminating and taking over all of these other cell lines.

ROBERT: Well, you just said "she," but I get your point.

JAD: And she—and she does—it in the—"it" does it in the strangest way.

REBECCA SKLOOT: HeLa cells can—you know, they can float on dust particles. They can ride on ...

JAD: They can what?

REBECCA SKLOOT: Um ...

JAD: They can ...

REBECCA SKLOOT: They can ...

JAD: ... float on dust particles?

REBECCA SKLOOT: Yeah. So they can ...

JAD: You mean they can hop out of a dish and just get on a particle and just float?

REBECCA SKLOOT: Mm-hmm.

JAD: Out the door.

REBECCA SKLOOT: Up the stairs.

JAD: Down the hall.

REBECCA SKLOOT: One HeLa cell ...

JAD: Into a lab.

REBECCA SKLOOT: ... drops into ...

JAD: Into a dish.

REBECCA SKLOOT: ... a cell culture where there's other cells growing. And because HeLa cells are sort of powerful cells, they take over.

JAD: So on the heels of this catastrophe, someone at Hopkins decides to make a test. Let's make a test that will allow us to genetically determine if a cell is HeLa or if it isn't. And to make a long story short, this desire for a genetic test led scientists and then journalists to ask a question, which amazingly for 25 years had not been asked: Who was this woman? And that's when we found out her name. Henrietta Lacks.

JAD: This is the sound of Rebecca reading Henrietta's medical records for the first time.

[ARCHIVE CLIP, Rebecca Skloot: Okay. "This is a 30-year-old colored woman."]

JAD: She's sitting with Henrietta's youngest daughter, Deborah.

[ARCHIVE CLIP, Rebecca Skloot: This is the second of November. So this is again, when she was pregnant with you.]

[ARCHIVE CLIP, Deborah Lacks: Mm-hmm.]

[ARCHIVE CLIP, Rebecca Skloot: Right?]

JAD: Henrietta had five kids when she died at the age of 30. Most have no memory of her because they were too young. That's especially true of Deborah.

[ARCHIVE CLIP, Deborah Lacks: It does. I was only 15 months old, and I don't remember anything about my mother.]

REBECCA SKLOOT: Yeah. So she, you know, she—she had spent her entire life just sort of longing to know who her mother was, and did she like dancing?

[ARCHIVE CLIP, Deborah Lacks: You know, I always wanted to know what she liked to do, what she went, what she liked to eat.]

REBECCA SKLOOT: Did she breastfeed Deborah? She—she was really sort of almost fixated on that idea. She wanted to know if she was breastfed.

[ARCHIVE CLIP, Deborah Lacks: Oh, I don't—you know, I don't know what I would give up just to—just to have her here. I'll tell you. Just to see her and hold her.]

JAD: So in 1973 when a scientist calls the Lacks family and Deborah hears that little bits of the mother that she never knew are still alive? And, "Oh, by the way, can we take a blood test from you and your family, because we're having some contamination problems and we need these genetic markers, blah, blah, blah." Well, as you could imagine ...

[ARCHIVE CLIP, Deborah Lacks: Took me by surprise. It really did.]

JAD: ... it was really confusing.

[ARCHIVE CLIP, Deborah Lacks: I mean, how much is the—how much of her cells is out there, you know?]

JAD: Eventually she went online, did some searches. And found ...

REBECCA SKLOOT: Thousands and thousands of hits.

JAD: Like for instance, on HeLa clones.

REBECCA SKLOOT: And Deborah had heard, you know, various journalists in the past had come to her and mentioned, you know, Dolly, the cloned sheep and said, you know, your mom, they did this with your mom too. Meaning that's actually where the technology started. The first cells ever cloned were HeLa cells. But that was just cloning a cell, not cloning an entire being. But that distinction is very complicated, particularly for somebody who doesn't know what a cell is.

JAD: Yeah.

REBECCA SKLOOT: So Deborah, between what journalists had told her and Googling "Henrietta Lacks and clone" thought there were thousands of clones of her mother around. And...

JAD: Really? You mean like a bunch of Henriettas?

REBECCA SKLOOT: Thousands.

JAD: Walking the streets?

REBECCA SKLOOT: Walking around.

JAD: And Rebecca says that one of Deborah's biggest fears was bumping into one of these clones.

REBECCA SKLOOT: She said—you know, she would say, "I—I would have to go talk to her, and she wouldn't know that I was her daughter. And—and—and I don't know that I could handle that."

JAD: Wow.

REBECCA SKLOOT: It sounds so fantastical. Like, how could someone believe that there are copies of her mother walking around? But at one point, 25 years after their mother died, someone called and said, "Hey, part of her's still alive. And, you know, we've grown enough of her so that it could wrap around the Earth several times."

JAD: At that point, all bets are off, I would say.

REBECCA SKLOOT: Yeah, right. Exactly.

JAD: Not to mention that it's actually not that crazy. Because your DNA is in your cells, so if your cells are taken out of you and they still grow, well, isn't that still you, alive?

ROBERT: It's of you, but it's clearly not you. And then yet it's going on and on. That's—it's a funny middle space, that's for sure.

JAD: Yeah. So here's what happens. Deborah and Rebecca decide to team up, to go off in search of Henrietta Lacks together. And they begin to interview anyone they can find—friends, family. They dig up old records. And after many, many years, they managed to put together a picture of who this woman was.

REBECCA SKLOOT: She was born in—in Roanoke.

JAD: 1920, Virginia.

REBECCA SKLOOT: And I think she was the 10th of the 11 children.

JAD: But apparently she was the one that stood out.

REBECCA SKLOOT: Everybody talked about her as just being—you know, she was the catch.

SADIE STURDIVANT: Oh my goodness. I don't think I could top her.

JAD: This is Sadie Sturdivant, Henrietta's cousin.

GLADYS LACKS: Henri was a beautiful girl. I was beautiful myself, but Henri was very pretty. Brown eyes, long hair.

JAD: And this is Henrietta's sister, Gladys.

GLADYS LACKS: Nice tan complexion.

JAD: Everyone that they spoke with zeroed in on the same few points. Like, first ...

REBECCA SKLOOT: She was really meticulous about her nails.

JAD: Always painted 'em red.

REBECCA SKLOOT: This very deep red.

JAD: And second, Henrietta just had this ...

REBECCA SKLOOT: She was very ...

JAD: ... strength.

REBECCA SKLOOT: ... forthright. Very sassy.

JAD: Like her cells.

ROBERT: [laughs]

JAD: Now the unfortunate thing is that when it comes to her life, you know, how she lived, there's not a ton of detail.

[ARCHIVE CLIP, Rebecca Skloot: Right? October, so this is when she first went in with her cancer.]

JAD: But in that hotel room, when the two of them were flipping through the medical records, they did start to get some detail.

[ARCHIVE CLIP, Deborah Lacks: Okay, now here's her autopsy.]

[ARCHIVE CLIP, Rebecca Skloot: Right.]

JAD: About how she died.

[ARCHIVE CLIP, Rebecca Skloot: These are things I wanna take notes about.]

JAD: Was she in a lot of pain when she died?

REBECCA SKLOOT: Yeah. Her—this was the hardest thing. She was eventually in an unbelievable amount of pain.

[ARCHIVE CLIP, Rebecca Skloot: She complains of pain in the right lower quadrant.]

REBECCA SKLOOT: Wailing and—and crying and, you know, moaning for the lord to help her. And ...

JAD: According to the records, doctors tried everything.

REBECCA SKLOOT: Morphine, they injected a hundred percent alcohol straight into her spine.

JAD: Wow.

[ARCHIVE CLIP, Rebecca Skloot: Complains of pain, in spite of the alcohol injection last week.]

REBECCA SKLOOT: And she would have these fits of pain, through spasms where these waves of pain would hit her and she would rise up out of the bed and thrash around. So they strapped her to the bed and her sister—well, along with one of her friends, you know, one of them would tighten the straps and the other one would put a pillow in her mouth so that she wouldn't bite her tongue.

[ARCHIVE CLIP, Deborah Lacks: Just to—if I only just had the chance to take care of her.]

JAD: Now dealing with how her mother died was one thing. But the cells made it more complicated.

REBECCA SKLOOT: For Deborah, her—her mother was alive in these cells somehow. So if that's true, that left very big questions. And the first of them, for Deborah was, how can Henrietta rest in peace if part of her, with part of her soul is being, you know, shot up to the moon and injected with all these chemicals and radiated and bombarded.

[ARCHIVE CLIP, Deborah Lacks: It was just so painful knowing, you know, they had her cells on the back of a donkey going to Turkey. You know, in the airplanes just going all over the world. I—I—I just don't know.]

REBECCA SKLOOT: She worried about them. She worried that it hurt her mother ...

JAD: Really?

REBECCA SKLOOT: ... when you infect the cells with Ebola, does somehow her mother feel the pain that comes with Ebola?

JAD: And had a scientist ever, like, sat down with her?

REBECCA SKLOOT: No.

JAD: No. I mean, just explain to her like this is ...

REBECCA SKLOOT: No. No, never. Nothing.

JAD: Because it—it just strikes me that it wouldn't be that hard to explain that, like, when you take cells out of a body, it's kind of like when you cut your fingernail off, it just doesn't ...

REBECCA SKLOOT: But your fingernail doesn't keep growing and living after you cut it off. It's a—it's really hard. There is no other example of some way that you can take something from someone's body and have it keep living and not have a person feel it.

JAD: And all these worries, says Rebecca, began to build in Deborah's mind. And build and build.

REBECCA SKLOOT: There came this point, we—so we were at her cousin's house.

JAD: This is her cousin Gary.

REBECCA SKLOOT: She was broken out in hives. And she was telling him all the stuff that she'd recently learned.

JAD: You can almost hear it on the tape. She says to him ...

[ARCHIVE CLIP, Deborah Lacks: Leave it there.]

JAD: She can't carry the burden of these cells anymore. She can't do it.

[ARCHIVE CLIP, Deborah Lacks: I can't cry no more. I don't wanna cry to them no more.]

REBECCA SKLOOT: And I had been sort of trying to talk her down and he was trying to talk her down.

[ARCHIVE CLIP, Deborah Lacks: [inaudible]

REBECCA SKLOOT: And then just out of nowhere, he just started singing

[ARCHIVE CLIP, Gary: [singing] I know the Lord been good, yo, I know the Lord been good, He put food on my table, I know the Lord been good.]

REBECCA SKLOOT: And he started preaching.

[ARCHIVE CLIP, Gary: There are some things that doctors cannot do.]

REBECCA SKLOOT: He held her head in his hands.

[ARCHIVE CLIP, Gary: And we come to you tonight, the author and the finisher of our faith. And we thank you for being a rainmaker. God, you make a path in the mighty water. You cause the mountains to skip like rams and—and the little hills like lambs. We thank you today.]

[ARCHIVE CLIP, Deborah Lacks: Thank you Lord.]

[ARCHIVE CLIP, Gary: Thank you for that.]

[ARCHIVE CLIP, Deborah Lacks: Thank you, Lord.]

[ARCHIVE CLIP, Gary: Thank you.]

[ARCHIVE CLIP, Deborah Lacks: Thank you Lord.]

[ARCHIVE CLIP, Gary: Thank you.]

[ARCHIVE CLIP, Deborah Lacks: Thank you Jesus. Hallelujah, hallelujah, Hallelujah! Hail Mary. Amen. Thank you. Amen Thank you.]

REBECCA SKLOOT: And she just relaxed.

[ARCHIVE CLIP, Deborah Lacks: Feel lighter, man. I feel light. [sighs]]

JAD: She didn't realize it then, but that night Deborah was on the verge of a stroke.

[ARCHIVE CLIP, Rebecca Skloot: You wanna walk up and see the building?]

[ARCHIVE CLIP, Deborah Lacks: You wanna walk? Okay.]

[ARCHIVE CLIP, Rebecca Skloot: You—he said it's just up this hill. Yeah.]

JAD: One of the last things the two of them did together was to visit Hopkins.

[ARCHIVE CLIP, Rebecca Skloot: So how do you feel?]

[ARCHIVE CLIP, Deborah Lacks: Fine.]

[ARCHIVE CLIP, Rebecca Skloot: Yeah?]

[ARCHIVE CLIP, Deborah Lacks: So far so good.]

JAD: And meet her mother's cells for the first time.

[ARCHIVE CLIP, Christoph Lengauer: I—I'm gonna show you that room and I can show you the cells.]

JAD: Because the scientist had finally contacted her.

REBECCA SKLOOT: Christoph Lengauer, the scientist who invited us into his lab to see the cells, he had projected them onto a screen.

[ARCHIVE CLIP, Christoph Lengauer: Don't be confused. They look green here, okay?]

REBECCA SKLOOT: They're sort of neon green in this particular case because of the way they were stained and projected. So they're very ethereal looking. They're very sort of—they're—they glow, you know? I mean, when you think about angels, right? You think of something glowing. Christoph turned on this screen and she just—you know, I mean, Deborah just gasped. She just, "Oh!"

[ARCHIVE CLIP, Deborah Lacks: Oh my God.]

[ARCHIVE CLIP, Christoph Lengauer: This is about 200 times bigger than what they really are.]

JAD: A swirling hurricane of cells.

[ARCHIVE CLIP, Deborah Lacks: Wow.]

[ARCHIVE CLIP, Rebecca Skloot: Did you say "Oh, that's my mother."]

[ARCHIVE CLIP, Deborah Lacks: Yeah.]

[ARCHIVE CLIP, Rebecca Skloot: Pretty good. Pretty good, yeah.]

[ARCHIVE CLIP, Deborah Lacks: It's hard to leave. Oh my God].

REBECCA SKLOOT: Christoph gave—he gave her a—a vial of these cells that she could hold in her hand. And they came out of a—out of a freezer. So they—they were very cold and she sort of, you know, rubbed her hands together with the vial in her hands to sort of warm them up, and sort of blew on them to keep them warm. And then she just sort of whispered to the cells. It was sort of incredible. She just raised them up to her lips and she said, "You're famous, but nobody knows it."

JAD: Just a week before Rebecca and I spoke in the studio, she got a call that Deborah had died.

REBECCA SKLOOT: She had a heart attack and died in her sleep.

JAD: Okay, so as you may know at this point, that segment was based on Rebecca Skloot's book, The Immortal Life of Henrietta Lacks. It's an amazing book. It came out right when we released that piece; it's been a couple years now. And recently we met up with Rebecca in Chicago just to get an update.

REBECCA SKLOOT: It's like the book came out and then ...

JAD: Because since the publication of that book ...

REBECCA SKLOOT: ... the whole story just sort of exploded.

JAD: ... it just took off. Scholarships were named after Henrietta.

REBECCA SKLOOT: Henrietta was given an honorary doctorate.

JAD: Monuments.

REBECCA SKLOOT: Highway placards and historical landmarks and buildings named after her. There's a high school called Henrietta Lacks High, HeLa High for short.

JAD: Meanwhile, the book is exploding. She went on this, like, insane book tour. Members of the Lacks family began to join her.

REBECCA SKLOOT: It started off with just Sonny Lacks would go and do a sort of onstage Q and A. And people started cheering. And scientists standing up saying, "I want to tell you what I did with these cells, and I want to tell you why this was important for me. And I'm sorry it was hard for you." And people reaching out. "I'm alive today because of this drug that your mother's cells helped develop." Or, you know, "I do this in my lab." I mean, they just—it never stopped. It was just a flood.

JAD: Which is in a way, what Deborah always wanted.

REBECCA SKLOOT: She wanted to go to every event. She wanted to be on every television show. She had her dress picked out for Oprah, like, you know, eight years before the book came out. You know, she was—Deborah wanted this. This is exactly what she always dreamed of.

JAD: But then just last year, something interesting happened—interesting and troubling.

REBECCA SKLOOT: So, yeah. So March, 2013, this group of scientists from Germany sequenced the HeLa genome and published it online where anyone can download it. You just click a button. I downloaded it. It was just there. And they did not ask the family. And my initial reaction when I saw this press coverage was they did what? Because within the HeLa genome, there was also Henrietta's genome. And some of that was—50 percent of that was passed on to her kids and 25 percent potentially to her grandkids. But one of the things—so they put out a press release when this genome was sequenced, and on it, it had a little, you know, frequently asked questions that the press might wonder about. And one of them was, "Can you learn anything about Henrietta or her children from this genome?" And the answer was, no, can't learn anything about them.

REBECCA SKLOOT: And I do—and I believe that they believe this, but this is a misconception. You can, in fact, learn about people, and in fact, you cannot even hide people's private information if you try. And so one researcher took the genome and created essentially a report on Henrietta's genes. You have X percent chance of bipolar disorder, alcoholism, obesity. You know, just has this huge range of things. And some of it is yes, there's some real potential privacy violation, like with the Alzheimer's genes and things like that. Bits of information about your family.

ROBERT: Did Henrietta have ...

REBECCA SKLOOT: I will not tell you. [laughs]

JAD: Well, this report that this dude made, did he list all of these things you're describing?

REBECCA SKLOOT: So—and he sent it to me. So I called the Lacks and said, you know, "Did you know this—anything about this?"

JERI LACKS-WHYE: And Rebecca had called.

REBECCA SKLOOT: You know, they did not.

JERI LACKS-WHYE: And it kind of bothered us because we're saying okay, why wasn't the family involved with this decision making?

JAD: That was Jeri Lacks.

JERI LACKS-WHYE: Jeri-Lacks-Whye.

JAD: Henrietta Lacks's granddaughter.

JERI LACKS-WHYE: Back in the '50s, you had Henrietta Lacks. Her cells were removed without her family's knowledge. Then you go in the '70s, my dad and his siblings, they took blood samples, used it for research. They didn't give consent. Then you come 2013, and you have Henrietta's—I felt as though it was her medical records being published publicly.

REBECCA SKLOOT: You know, their first question was, "Can you get them to take it down so we can figure out what it is, what it means?" So I reached out to the scientists and said, "The Lacks family, you know, has asked that you take this down." And they replied immediately. They took it offline immediately. And then I contacted Francis Collins, who's, you know, the head of the NIH. I also reached out to Kathy Hudson, who used to run the Genetics and Public Policy Center at Hopkins, and is now over at the NIH dealing with a lot of these issues. So I reached out to them and said, "Somebody needs to try to just help the Lacks family get consent. Somebody needs to just go back, pretend like this is starting now, and just do what probably should have happened in the first place."

JERI LACKS-WHYE: And that thing might have been like a couple of weeks after that, several weeks after that, that we had a meeting with NIH. It was my mom, myself, my sister, my dad, my uncle, my brother David, my sister Kim, my cousin Ron, Rebecca Skloot. She was actually on a conference call.

REBECCA SKLOOT: All the NIH folks drove up to Baltimore.

JERI LACKS-WHYE: We googled their names. Dr. Collins and Kathy and the guys sitting there, was like, oh, we were kind of—we was excited. Like, okay, yeah, we sitting in a room with the director.

REBECCA SKLOOT: They all met.

JERI LACKS-WHYE: Just to listen to everybody, you know, listen to our concerns, listen to our questions. What can be done? What can't be done?

REBECCA SKLOOT: The Lacks family asked about everything you could possibly imagine.

JERI LACKS-WHYE: Went over, you know, the information about genome, gene mapping, sequencing.

REBECCA SKLOOT: Just the basic science of genomes.

JERI LACKS-WHYE: To get a clear understanding of what the genome meant to science. We don't want to stop science, but yet we don't want certain information to be just broadly available publicly.

REBECCA SKLOOT: So they laid out three options. One was we don't release any of them at all. And then there was a second option which was release it with no restrictions, just put it out there like the Germans did. And then there was a third option which was release it with restrictions. So the NIH would house it on their own servers, and that in order to get access to it, you would have to send in an application that said this is the research we're gonna do. There would be a committee formed that was a group of scientists and then some members of the Lacks family.

JERI LACKS-WHYE: The HeLa Genome Committee.

REBECCA LACKS: One grandchild and one great grandchild.

JERI LACKS-WHYE: My brother David and my cousin Veronica.

REBECCA SKLOOT: And obviously this is the option they picked. So yeah, there's this committee and they just a few weeks ago saw their first batch of applications, and then the news hit and it was the first time that they were part of the news. So ...

JAD: They, the third generation?

REBECCA SKLOOT: Yeah, the Lacks family. Like, Jeri Lacks was on MSNBC Live doing an interview about this. And, like, she'd never done this before and, you know, they were in every newspaper. I mean, it was everywhere.

JERI LACKS-WHYE: Yeah, it's pretty exciting. Yeah. We are stepping into the spotlight. It's the grandchildren.

REBECCA SKLOOT: The third and fourth generation of Lackses.

JERI LACKS-WHYE: It's the great grandchildren.

REBECCA SKLOOT: This is their story now. And that's—you know, the other thing that is an undercurrent through all this is Deborah's gone.

JERI LACKS-WHYE: She was the one who was just so forceful and so dedicated with getting the information out there about her mom.

REBECCA SKLOOT: And, you know, when I look at the four years since the book came out, you know, there are a few moments that stand out as incredibly emotional ones for me, having to do with Deborah. But this—the first meeting, sitting on this speakerphone, listening to this meeting.

JERI LACKS-WHYE: These high officials, sitting at the table and have sincere concern about our questions.

REBECCA SKLOOT: If she could have said, "What do I dream might someday happen?" That would be what she would have described.

JERI LACKS-WHYE: I can—I can just imagine her just sitting there, and she is just laughing, rocking back and forth, twiddling her—her fingers, saying, "Yay!" Just absorbing all of this—this excitement.

JAD: I guess this is a good time for us to say goodbye. I'm Jad Abumrad. Thanks for listening.

[LISTENER: Hi, I'm Marika and I'm from Lima, Peru. And here are the staff credits. Radiolab was created by Jad Abumrad and is edited by Soren Wheeler. Lulu Miller and Latif Nasser are our co-hosts. Dylan Keefe is our director of sound design. Our staff includes: Simon Adler, Jeremy Bloom, Becca Bressler, W. Harry Fortuna, David Gebel, Maria Paz Gutiérrez, Sindhu Gnanasambandan, Matt Kielty, Annie McEwen, Alex Neason, Sarah Qari, Sarah Sandbach, Anisa Vietze, Arianne Wack, Pat Walters and Molly Webster. Our fact-checkers are Diane Kelly, Emily Krieger and Natalie Middleton.]

[LISTENER: Hi, my name's Michael Smith. I'm calling from Pennington, New Jersey. Leadership support for Radiolab's science programming is provided by the Gordon and Betty Moore Foundation, Science Sandbox, a Simons Foundation initiative, and the John Templeton Foundation. Foundational support for Radiolab was provided by the Alfred P. Sloan Foundation.]

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