Pod Insights Radiolab The Immortal Life of Henrietta Lacks About this episode Today, a story that starts small and private, with one woman alone in her bathroom, as she makes a quiet, startling discovery about her own body. But that small, private moment grows and grows, and pretty soon it becomes something so big that it has impacted the life of every person reading this right now… and all that without the woman ever even knowing the impact she had. We originally aired this story back in 2010, but we thought we’d bring it back today, as questions about bodily autonomy circle with renewed force.
EPISODE CREDITS: Reported by - Rebecca Skloot
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Transcript 6,432 words · 18 speakers
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0:44 Speaker 01 Heyo, 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.
1:27 Speaker 01 The story of one of the most important people in the history of medical science, who was almost erased from the record.
1:36 Speaker 02 Yep, you're, wait, you're listening. Okay. All right. Okay. All right. You're listening to Radiolab. Radiolab. From? WNYC.
1:48 Speaker 03 See?
1:49 Speaker 02 Yep.
1:50 Speaker 01 Rewind.
1:55 Speaker 03 Hey, I'm Jada Boomrod.
1:56 Speaker 04 I'm Robert Krulwich.
1:57 Speaker 03 This is Radiolab.
1:58 Speaker 04 The podcast.
1:59 Speaker 03 Today on the podcast, a story of-
2:00 Speaker 04 We've been wanting to do this story for-
2:03 Speaker 03 Forever.
2:04 Speaker 04 Forever. Like, two years ago, I think.
2:06 Speaker 03 Oh, longer than that.
2:07 Speaker 04 Yeah.
2:07 Speaker 03 It's a story that comes from a friend of mine, Rebecca Sklute.
2:10 Speaker 05 Should I hear me talk? Make noise?
2:12 Speaker 03 That's her.
2:12 Speaker 05 We can move me closer, bro.
2:13 Speaker 03 And she has been wanting to tell this story-
2:15 Speaker 04 Even longer.
2:16 Speaker 03 Since she was in the womb. You know, I mean, she's been researching this story for 10 years.
2:20 Speaker 05 Hello, hello, hello.
2:21 Speaker 03 Because it is an amazing story, and confusing at times, about a tumor that begins to expand-
2:26 Speaker 05 Okay.
2:27 Speaker 03 And never stops. The story begins in 1950 in Baltimore with a black woman, who for much of the story won't have a name. She's in her bathroom, and she discovers, pretty much all on her own, that she has cancer.
2:39 Speaker 05 Um, it's all, it's a little bit of a mystery how she initially knew this, but she knew it was there.
2:48 Speaker 05 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.
3:05 Speaker 03 Chapter one.
3:06 Speaker 05 First, she went into her local doctor.
3:07 Speaker 06 By chance, I happened to be an attending at that time.
3:12 Speaker 03 The guy she eventually ended up seeing at Johns Hopkins University was this fellow, Dr. Howard Jones.
3:18 Speaker 06 I'm 98. Next month, I'll be 99.
3:20 Speaker 03 Wow. So when she came in to see you, can you tell me anything about what she was like?
3:25 Speaker 06 Well, she was a, uh, uh-
3:30 Speaker 03 You don't remember anything?
3:31 Speaker 06 No, I really don't.
3:32 Speaker 03 But you remember her tumor, right?
3:33 Speaker 06 Oh, absolutely. I never saw anything like it before or after.
3:39 Speaker 05 And this didn't look like a normal tumor. It was, it was deep purple and-
3:43 Speaker 06 About as big as a quarter.
3:45 Speaker 05 Sort of shiny.
3:46 Speaker 06 Very soft. That was another thing about it on examination.
3:49 Speaker 05 Slightly raised.
3:50 Speaker 06 When you touched it, you might think it was, um, red jello.
3:54 Speaker 05 There was something very strange about the way it looked.
3:55 Speaker 06 There was something weird about it.
3:58 Speaker 03 So, doctors took a sample.
4:00 Speaker 05 Yeah, so they would cut off these little teeny tiny pieces.
4:02 Speaker 03 Really small.
4:03 Speaker 05 Teeny tiny.
4:04 Speaker 06 A bite or two.
4:05 Speaker 05 They would take a piece.
4:06 Speaker 03 Put it in a tube.
4:06 Speaker 05 And one would go to the lab for diagnosis.
4:08 Speaker 03 And in this case, since it was Hopkins?
4:10 Speaker 05 They would take an extra piece and give it to a man named George Gey.
4:16 Speaker 03 Two. So George Gey was a researcher who worked at Hopkins. He had a deal with the clinic that anytime 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. In a dish. In a dish.
4:40 Speaker 05 George Gey had been trying to do this, working on this for decades.
4:43 Speaker 03 And why exactly?
4:44 Speaker 05 It's sort of like, it's sort of like having a little tiny bit of a person in a lab that's detached from them, so that you can do whatever you want with them. 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...
5:02 Speaker 03 Oh, so this is like, this is like the basic thing you need to study human biology?
5:06 Speaker 05 Mm-hmm.
5:06 Speaker 03 You need cells in a dish?
5:08 Speaker 05 Yes.
5:10 Speaker 03 Problem was, anytime they tried to grow human cells in a dish...
5:17 Speaker 07 Ow, my dog.
5:17 Speaker 03 They would die.
5:19 Speaker 07 Yeah, they died.
5:20 Speaker 03 This is George Gey's former lab assistant. Can you just tell me your name? You know, my name is so-and-so.
5:25 Speaker 07 My name is Mary. I'll put my maiden name in there.
5:28 Speaker 03 Oh, sure.
5:28 Speaker 07 Toy Kubitschek.
5:30 Speaker 03 Mary lives just outside of Baltimore, about an hour from where she used to work with George Gey.
5:34 Speaker 07 This is Dr. Gey.
5:37 Speaker 03 And she showed me some pictures.
5:38 Speaker 07 And he's sitting at a microscope.
5:40 Speaker 03 Look at him, he looks, he seems like a really big guy, like a really tall guy.
5:43 Speaker 07 He was a big guy.
5:44 Speaker 03 At least 6'5", judging from the picture.
5:46 Speaker 07 Yeah, he was.
5:47 Speaker 03 And in every slide that she showed me, he had kind of a crazy smile on his face, like he's got a, like he's having a good time.
5:52 Speaker 07 He was like a big bear of a man, is what I always thought of.
5:55 Speaker 03 Oh, yeah. In any case, Mary says they were completely stumped at why the human cells always died.
6:00 Speaker 07 He was.
6:00 Speaker 03 But they just did.
6:01 Speaker 07 Yeah.
6:02 Speaker 03 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.
6:09 Speaker 07 I knew nothing about her.
6:10 Speaker 03 No one expected anything.
6:11 Speaker 07 No, he was doing the, well, he probably, you know, was ever hopeful. But, you know, I was eating lunch and I thought, oh, the heck with it, you know, it's not going to grow, I'm going to finish this sandwich.
6:21 Speaker 03 Yeah.
6:23 Speaker 07 And that's what I did.
6:24 Speaker 03 Three.
6:25 Speaker 07 And then I went in and...
6:28 Speaker 03 She gave the cells some food.
6:29 Speaker 07 Did my usual.
6:30 Speaker 03 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.
6:40 Speaker 03 And then the next day, still growing.
6:43 Speaker 07 They just kept plugging along.
6:44 Speaker 03 And the next. Rebecca says they doubled in size.
6:49 Speaker 07 Yeah. All of a sudden, you know, I kept transferring them and making more tubes, transferring them, making more tubes, transferring. They were very reliable.
6:59 Speaker 05 And stronger.
7:01 Speaker 07 They just kept plugging along.
7:03 Speaker 03 Meanwhile, the woman who had spawned all these cells died.
7:06 Speaker 05 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.
7:16 Speaker 03 But not her cells.
7:18 Speaker 08 And to tell us this story, it's a privilege to introduce Dr. George Guy.
7:22 Speaker 03 It wasn't long after that George Guy appeared on TV, holding in his hand a little bottle.
7:26 Speaker 08 Now let me show you a bottle in which we have grown massive quantities of cancer cells.
7:33 Speaker 03 So did you want to look at the photos? You can't really get a sense of how aggressive this tumor was until you go to the Hopkins archives and look at George Guy's pictures and videos. Okay, this is the film can here, the HeLa cell film. Then it hits you.
7:47 Speaker 08 These are enlarged 10,000 times.
7:49 Speaker 03 Oh my God. Swirling hurricanes of cells, just like thousands of little pots.
7:56 Speaker 08 Some small and some very large.
7:58 Speaker 03 Slumped together.
7:59 Speaker 07 Kept transferring them and making more tubes.
8:01 Speaker 08 See them under the microscope.
8:02 Speaker 03 Looks like something has just exploded.
8:04 Speaker 08 Undergoing division.
8:06 Speaker 03 That's amazing.
8:07 Speaker 07 And they just kept plugging along.
8:09 Speaker 02 Keeps getting bigger and bigger.
8:10 Speaker 05 Stronger.
8:11 Speaker 09 It's indestructible. It's indescribable. Nothing can stop it.
8:18 Speaker 05 Why hers just sort of took off and grew and the other ones that they had tried before it didn't is just a little bit of a mystery. Nobody really knows.
8:26 Speaker 03 For. Nonetheless, George Guy 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 Guy sent Mary back down to get more cancer cells from the corpse.
8:40 Speaker 07 Oh, he sent me down to the morgue, yeah.
8:42 Speaker 03 Really?
8:43 Speaker 07 Oh, yeah. So I went down there and the coroner, I don't know who he was, Dr. Guy was there too, and they were standing down at her feet, sort of.
8:54 Speaker 03 Meanwhile, she's like, what?
8:55 Speaker 07 She's lying out there. She's already open. I got some samples. The coroner would take them out and give them to me.
9:03 Speaker 03 What'd she look like?
9:04 Speaker 07 I couldn't look at her face. I couldn't look at her.
9:09 Speaker 07 The only thing I looked at were her toes and they had chipped nail polish on them. And that was really like, oh, this is a real person.
9:18 Speaker 03 What was it about the nail polish that hit you?
9:21 Speaker 07 Oh, because 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.
9:34 Speaker 03 Yeah, yeah. 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. HeLa? Like HeLa, H-E-L-A. Uh huh. No one would actually know why he had named them that for about two decades. Hmm. But what he did with these cells, you know, 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. But George Gey?
10:07 Speaker 07 He just passed them out freely.
10:08 Speaker 03 Didn't try and make any money off them.
10:10 Speaker 07 Because it was a nice, nice, new thing that could help science.
10:14 Speaker 03 Mary says that George Gey began to send HeLa all over the world.
10:17 Speaker 07 Yep.
10:18 Speaker 03 And pretty soon she was in hundreds of labs.
10:20 Speaker 05 And, you know, this was in the midst of the polio epidemic.
10:22 Speaker 02 This is the season when polio is at its worst.
10:25 Speaker 03 We're talking early 50s, right?
10:26 Speaker 05 Yeah, so there's 1951, 52, you know, schools are being closed, kids are being kept inside.
10:32 Speaker 09 To this cruel disease, medical science still has no complete answer.
10:36 Speaker 05 There was this enormous effort to develop the polio vaccine.
10:39 Speaker 03 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. So what did they do? Well, one of the guys that Gey, one of the guys that Gey had sent the cells to, this collaborator friend of Gey's, 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. So it's the super Xerox cell. No matter what you want to do, it'll be like, make a copy, make a copy, make a copy. Yeah. So now they had a way of making polio.
11:11 Speaker 05 HeLa could just be a polio factory.
11:15 Speaker 03 And so the government made a factory.
11:17 Speaker 05 At the Tuskegee Institute.
11:18 Speaker 03 A real one.
11:19 Speaker 05 Literally a factory. So they had...
11:22 Speaker 05 These big stainless steel vats of culture medium that were sort of rotated constantly. Autoclaves for sterilizing all their equipment. A row with four or five microscopes, crazy Frankenstein-ish gizmos. They had this machine that was like an automatic cell dispenser. And it had this sort of long mechanical arm. It squirted a certain amount of this culture medium filled with HeLa cells into a tube.
11:46 Speaker 03 Wow, this is like the beauty of industry right here.
11:50 Speaker 05 Yeah, it is, absolutely.
11:51 Speaker 03 And the cells that were produced at this factory, she says, were used to test the polio vaccine.
11:55 Speaker 09 ... a potent vaccine to prevent the dreaded disease.
11:57 Speaker 05 The tests that they were doing in Norse, it was the largest field trial ever done. At its peak, the Teskegee HeLa Production Center was producing about six trillion cells a week.
12:09 Speaker 03 Wow.
12:10 Speaker 05 Which is kind of inconceivable.
12:13 Speaker 03 But that was actually only the beginning, says Rebecca, because this factory led to an even bigger one that was for profit.
12:18 Speaker 05 Right.
12:19 Speaker 03 And that second factory was the first time any human biological material was commercialized. So this was the first biotech company?
12:26 Speaker 05 Yeah, basically.
12:27 Speaker 03 Okay, but when they first started mass producing HeLa, what sorts of things were done to these cells? What sorts of problems were investigated?
12:34 Speaker 05 Like, anything you can imagine.
12:38 Speaker 05 So they infected HeLa cells with every kind of virus. Hepatitis, E. coin, encephalitis virus. Yellow fever. Herpes. Nasals mumps. Rabies, whatever. Like, you just, any vaccine. And this was just, it was a revolution for scientists. There was research on chemotherapy drugs. HeLa cells went up in some of the first space missions.
12:57 Speaker 03 Really?
12:58 Speaker 05 Yeah, so they were...
12:59 Speaker 03 HeLa went into space?
13:00 Speaker 05 HeLa went into space, which every time I hear about it, I think of like, "HeLa in space."
13:07 Speaker 03 And why? I mean, just because?
13:09 Speaker 05 The premise was to see what happens to human cells in zero gravity. If we're going to be sending people up into space, what's going to happen to them up there?
13:15 Speaker 03 Wow.
13:16 Speaker 05 So HeLa went up before any humans did. And then she eventually went up, she, the cells, there was actually...
13:21 Speaker 03 That was an interesting little slip-up there.
13:23 Speaker 05 Yeah, I know.
13:26 Speaker 03 Okay, so let's actually skip forward in the story to the point where that slip-up you just heard, that pronoun confusion, gets really personal.
13:38 Speaker 05 That's right, after this break.
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15:13 Speaker 10 I'm Urliam Woods.
15:14 Speaker 11 I'm Nigel Poor. We're the hosts and creators of Ear Hustle from PRX's Radiotopia.
15:19 Speaker 10 When we met, I was doing time at San Quentin State Prison in California.
15:23 Speaker 11 And I was coming in as a volunteer. The stories we tell are probably not what people expect from a prison podcast.
15:31 Speaker 10 Like cooking meals in a prison cell.
15:32 Speaker 11 Keeping little pets.
15:33 Speaker 10 Prison nicknames.
15:34 Speaker 11 And trying to be a parent from inside.
15:36 Speaker 10 Stories about life on the inside, shared by those who live it.
15:40 Speaker 11 Find Ear Hustle wherever you get your podcasts.
15:48 Speaker 01 Lulu, Radiolab. So just before the break, we heard our wonderful reporter Rebecca Sklute slip up a bit and call a cluster of HeLa cells "she."
15:59 Speaker 03 Okay, it's the late 60s, 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. Well, you just said "she," but I get your point. And she does it in the-- it does it in the strangest way.
16:24 Speaker 05 HeLa cells can, you know, they can float on dust particles. They can ride on--
16:29 Speaker 03 They can what?
16:30 Speaker 05 Um--
16:31 Speaker 03 They can float on dust particles?
16:33 Speaker 05 Yeah, so they can--
16:35 Speaker 03 You mean they can hop out of a dish and just get on a particle and just float?
16:38 Speaker 05 Mm-hmm.
16:40 Speaker 03 Out the door?
16:41 Speaker 05 Up the stairs--
16:43 Speaker 03 Down the hall--
16:43 Speaker 05 --one HeLa cell--
16:44 Speaker 03 Into a lab--
16:45 Speaker 05 Drops into--
16:46 Speaker 03 Into a dish.
16:46 Speaker 05 --cell culture where there's other cells growing. And because HeLa cells are sort of powerful cells, they take over.
16:58 Speaker 03 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.
17:34 Speaker 03 This is the sound of Rebecca reading Henrietta's medical records for the first time.
17:38 Speaker 02 This is a 30-year-old colored woman.
17:43 Speaker 03 She's sitting with Henrietta's youngest daughter, Deborah.
17:45 Speaker 02 This is the 2nd of November, so this is again when she was pregnant with you.
17:49 Speaker 03 Henrietta had five kids when she died at the age of 30. Most have no memory of her because they were too young. And that's especially true of Deborah.
17:57 Speaker 12 I was only 15 months old and I don't remember anything about my mother.
18:01 Speaker 05 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?
18:09 Speaker 12 You know, I always wanted to know what she liked to do, what she went, what she liked to eat.
18:16 Speaker 05 Did she breastfeed, Deborah? She was really sort of almost fixated on that idea. She wanted to know if she was breastfed.
18:22 Speaker 12 Oh, I don't, you know, I don't know what I would give up just to, just to have her here, I tell you. Just to see her and to hold her.
18:32 Speaker 03 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 problem? We need these genetic markers, blah, blah, blah." Well, as you could imagine.
18:50 Speaker 12 Took me by surprise, it really did.
18:52 Speaker 03 It was really confusing.
18:53 Speaker 12 I mean, how much of the, how much of a cell is out there, you know?
18:57 Speaker 03 Eventually, she went online, did some searches, and found...
19:00 Speaker 05 Thousands and thousands of hits.
19:01 Speaker 03 Like, for instance, on HeLa clones.
19:04 Speaker 05 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.
19:26 Speaker 03 Yeah.
19:27 Speaker 05 So Deborah, between what journalists had told her and Googling Henrietta Lacks in clone, thought there were thousands of clones of her mother around and...
19:35 Speaker 03 Really? You mean like a bunch of Henriettas?
19:37 Speaker 05 Thousands.
19:38 Speaker 03 Walking the streets?
19:39 Speaker 05 Walking around.
19:40 Speaker 03 And Rebecca says that one of Deborah's biggest fears was bumping into one of these clones.
19:44 Speaker 05 She said, you know, she would say, "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." 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.
20:04 Speaker 03 At that point, all bets are off, I would say.
20:06 Speaker 05 Yeah, right. Exactly.
20:10 Speaker 03 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? It's of you, but it's clearly not you, and yet it's going on and on. That's, um, it's a funny middle space, that's for sure. Yeah. So here's what happens. Deborah and Rebecca decide to team up, to go off in search of Henrietta Lacks together. They begin to interview anyone they can find, friends, family. They dig up old records. And after many, many years, they manage to put together a picture of who this woman was.
20:51 Speaker 05 She was born in Roanoke.
20:53 Speaker 03 1920, Virginia.
20:55 Speaker 05 And I think she was the 10th of the 11 children.
20:59 Speaker 03 But apparently, she was the one that stood out.
21:01 Speaker 05 Everybody talked about her as just being, you know, she was the catch.
21:05 Speaker 02 Oh, my goodness, I don't think I could top her.
21:08 Speaker 03 This is Sadie Sturdivan, Henrietta's cousin.
21:10 Speaker 02 Henny was a beautiful girl. I was beautiful myself, but Henny was very pretty. Brown eyes, long hair.
21:18 Speaker 03 And this is Henrietta's sister, Gladys.
21:20 Speaker 02 Nineteen complotion.
21:21 Speaker 03 Everyone that they spoke with zeroed in on the same few points. Like, first?
21:25 Speaker 05 She was really meticulous about her nails.
21:29 Speaker 03 Always painted them red.
21:30 Speaker 05 This very deep red.
21:31 Speaker 03 And second, Henrietta just had this.
21:33 Speaker 05 She was very.
21:34 Speaker 03 Strength.
21:35 Speaker 05 Fourth right. Very sassy.
21:40 Speaker 03 Like her cells.
21:42 Speaker 03 Now, the unfortunate thing is that when it comes to her life, you know, how she lived, There's not a ton of detail.
21:48 Speaker 02 Right, October. So this is when she first ran with her cancer.
21:51 Speaker 03 But in that hotel room, when the two of them were flipping through the medical records, they did start to get some detail.
21:57 Speaker 12 Okay. Now here's her autopsy.
21:59 Speaker 02 Right.
22:00 Speaker 03 About how she died.
22:02 Speaker 02 These are things I want to take notes about.
22:03 Speaker 03 Was she in a lot of pain when she died?
22:04 Speaker 05 Yeah, this was the hardest thing. She was eventually in an unbelievable amount of pain.
22:10 Speaker 02 She complains of pain in the right lower quadrant.
22:12 Speaker 05 Wailing and crying and, you know, moaning for the Lord to help her and...
22:17 Speaker 03 According to the records, doctors tried everything.
22:19 Speaker 05 Morphine, they injected, 100% alcohol straight into her spine.
22:23 Speaker 03 Wow.
22:23 Speaker 02 She complains of pain in spite of the alcohol injection last week.
22:27 Speaker 05 She would have these fits of pain.
22:31 Speaker 05 These spasms where these waves of pain would hit her and she would rise up out of the bed and thrash around.
22:38 Speaker 05 So they strapped her to the bed and her sister, 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.
22:50 Speaker 12 Just to...
22:53 Speaker 12 If I only just had the chance to take care of her.
22:59 Speaker 03 Now, dealing with how her mother died was one thing, but the cells made it more complicated.
23:06 Speaker 05 For Deborah, 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 irradiated and bombarded?
23:23 Speaker 12 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.
23:37 Speaker 12 I just don't know.
23:39 Speaker 05 She worried about them, she worried that it hurt her mother.
23:43 Speaker 03 Really?
23:43 Speaker 05 When you infect the cells with Ebola, does somehow her mother feel the pain that comes with Ebola?
23:49 Speaker 03 And had a scientist ever, like, sat down with her?
23:51 Speaker 05 No.
23:52 Speaker 03 No. You mean, just explain to her, like, this is...
23:55 Speaker 05 No, never. Nothing.
23:58 Speaker 03 Because 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...
24:06 Speaker 05 But your fingernail doesn't keep growing and living after you cut it off. 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.
24:19 Speaker 03 And all these worries, says Rebekah, began to build in Deborah's mind, and build, and build.
24:26 Speaker 05 There came this point, so we were at her cousin's house.
24:30 Speaker 03 This is her cousin, Gary.
24:31 Speaker 05 She was broken out in hives, and she was telling him all the stuff that she'd recently learned.
24:36 Speaker 03 You can almost hear it on the tape. She says to him,
24:40 Speaker 03 "She can't carry the burden of these cells anymore. She can't do it."
24:47 Speaker 05 And I had been sort of trying to talk her down, and he was trying to talk her down.
24:52 Speaker 05 And then just out of nowhere, he just started singing.
25:18 Speaker 05 And he started preaching.
25:23 Speaker 05 He held her head in his hands.
25:25 Speaker 13 And we come to you tonight, the author, and the finisher of our faith. And we thank you for being the way maker. You make a path in the mighty waters. You cause the mountains to skip like rams, and the loom heals like lamps. We thank you tonight.
25:45 Speaker 02 Thank you, Lord.
25:46 Speaker 13 Thank you for that.
25:47 Speaker 02 Thank you, Lord.
25:48 Speaker 13 Thank you.
25:49 Speaker 02 Thank you, Lord.
25:50 Speaker 13 Thank you.
25:51 Speaker 02 Thank you, Jesus. Hallelujah! Hallelujah! Hallelujah! Amen. Amen. Thank you. Amen.
26:06 Speaker 05 And she just relaxed.
26:09 Speaker 02 I feel light, amen. I feel light.
26:15 Speaker 03 She didn't realize it then, but that night, Deborah was on the verge of a stroke.
26:26 Speaker 03 One of the last things that the two of them did together was to visit Hopkins.
26:31 Speaker 03 And meet her mother's cells for the first time.
26:40 Speaker 03 Because a scientist had finally contacted her.
26:42 Speaker 05 Kristoff Langauer, the scientist who invited us into his lab to see the cells. He had projected them onto a screen.
26:48 Speaker 14 Don't be confused. They look green here, okay?
26:51 Speaker 05 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 glow, you know? I mean, when you think about angels, right? You think of something glowing.
27:06 Speaker 05 Kristoff turned on this screen and she just, you know, I mean Deborah just gasped. She just, "Oh."
27:17 Speaker 14 This is about 200 times bigger than what they really are.
27:22 Speaker 03 A swirling hurricane of cells.
27:25 Speaker 02 Did you say, "Oh, that's my mother?" Yeah! Pretty good, pretty okay. John Lee!
27:37 Speaker 05 Kristoff gave, he gave her a vial of these cells that she could hold in her hand. And they came out of a freezer, so they were very cold. And she sort of, you know, rubbed her hands together with the vial in her hand 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."
28:13 Speaker 03 Just a week before Rebecca and I spoke in the studio, she got a call that Deborah had died.
28:20 Speaker 05 She had a heart attack and died in her sleep.
28:39 Speaker 03 Okay, so, as you may know at this point, that segment was based on Rebecca Sklute'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 of years now. And recently, we met up with Rebecca in Chicago, just to get an update.
28:59 Speaker 05 It's like, the book came out, and then-
29:01 Speaker 03 Because since the publication of that book-
29:03 Speaker 05 The whole story just sort of exploded.
29:04 Speaker 03 It just took off. Scholarships were named after Henrietta.
29:07 Speaker 05 Henrietta was given an honorary doctorate.
29:09 Speaker 03 Monuments.
29:10 Speaker 05 Highway placards and historical landmarks and buildings named after her. There's a high school called Henrietta Lacks High, Hila High for short.
29:18 Speaker 03 Meanwhile, the book is exploding. She went on this, like, insane book tour. Members of the Lacks family began to join her.
29:24 Speaker 05 It started off with just Sunny 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 her. You know, I do this in my lab." I mean, they just, it never stopped. It was just a flood.
29:47 Speaker 03 Which is, in a way, what Deborah always wanted.
29:49 Speaker 05 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.
30:04 Speaker 03 But then, just last year, something interesting happens. Interesting and troubling.
30:08 Speaker 05 So, yeah, so, March 2013, this group of scientists from Germany sequenced the Hila 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 Hila genome, there was also Henrietta's genome. And some of that was, 50% of that was passed on to her kids and 25% potentially to her grandkids. But one of the things, so when 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.
30:50 Speaker 05 And I do, and I believe that they, 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. It 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 her family.
31:26 Speaker 03 Did Henrietta have?
31:28 Speaker 05 I will not tell you.
31:30 Speaker 03 Well, this report that this dude made, did he list all of these things you're describing?
31:36 Speaker 05 So, and he sent it to me. So, I called the Lax's and said, you know, did you know this, anything about this?
31:42 Speaker 15 Rebecca had called.
31:44 Speaker 05 You know, they did not.
31:45 Speaker 15 And it kind of bothered us because we're saying, okay, why wasn't the family involved with this decision making?
31:51 Speaker 03 That was Jerry Lax?
31:52 Speaker 15 Jerry Lax, why?
31:55 Speaker 03 Henrietta Lax's granddaughter?
31:57 Speaker 15 Back in the 50s, you had Henrietta Lax. 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.
32:23 Speaker 05 You know, their first question was, can you get them to take it down? And 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 and 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.
33:03 Speaker 15 And that same 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 Sclooch, she was actually on a conference call.
33:20 Speaker 05 All the NIH folks drove up to Baltimore.
33:22 Speaker 15 We Googled their names. Dr. Collins and Kathy Hudson. And it was like, oh, we were kind of, we was excited, like, okay, yeah, we sitting in a room with the director.
33:31 Speaker 05 They all met.
33:32 Speaker 15 Just to listen to everybody, you know, listen to our concerns, listen to our questions. What can be done, what can't be done.
33:39 Speaker 05 The Lacks family asked about everything you could possibly imagine.
33:42 Speaker 15 Went over, you know, the information about genome, gene mapping, sequencing.
33:47 Speaker 05 Just the basic science of genomes.
33:49 Speaker 15 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.
34:01 Speaker 05 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 then in order to get access to it, you would have to send in an application that said, "This is the research we're going to do." There would be a committee formed that was a group of scientists and then some members of the Lacks family.
34:29 Speaker 15 The Heela-Gino Committee.
34:31 Speaker 05 One grandchild and one great-grandchild.
34:33 Speaker 15 My brother David and my cousin Veronica.
34:35 Speaker 05 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.
34:49 Speaker 03 They, the third generation?
34:50 Speaker 05 Yeah, the Lacks family. Like Jerry Lacks was on MSNBC Live doing an interview about this. And like, she, you know, she'd never done this before and, you know, they were in every newspaper. I mean, it was everywhere.
35:03 Speaker 15 Yeah, it's pretty exciting. Yeah, we are stepping into the spotlight. It's the grandchildren.
35:08 Speaker 05 The third and fourth generation of Lackses.
35:11 Speaker 15 It's the great-grandchildren.
35:12 Speaker 05 This is their story now. And that's, you know, the other thing that is an undercurrent through all this is Deborah's gone.
35:18 Speaker 15 She was the one who was just so forceful and so dedicated with getting the information out there about her mom.
35:26 Speaker 05 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.
35:43 Speaker 15 These high officials sitting at the table and have sincere concern about our questions.
35:50 Speaker 05 If she could have said, "What do I dream might someday happen?", that would be what she would have described.
35:56 Speaker 15 I can, I can just imagine her just sitting there and she'd just laughing, rocking back and forth, twiddling her tongue, her fingers, saying, "Yay." Just absorbing all of this, this excitement.
36:16 Speaker 03 And I guess it's a good time for us to say goodbye. I'm Chad Abumrad. Thanks for listening.
36:22 Speaker 16 Hi, I'm Mary Cruz, and I'm from Lima, Peru. And here are the staff credits. Radiolab was created by Chad 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 Gabel, Maria Paz Gutierrez, Sintun Niana Sambandan, Matt Kielty, Annie McEwen, Alex Neeson, Sarah Carey, Sarah Sandback, Anissa Bitza, Ariane Wack, Pat Walters, and Molly Webster. Our fact-checkers are Diane Kelly, Emily Krieger, and Natalie Mirrington.
37:04 Speaker 17 Hi, my name is 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, the Simons Foundation Initiative, and the John Templeton Foundation. Foundational support for Radiolab was provided by the Alfred P. Sloan Foundation.
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