The Immortal Life of Henrietta Lacks

Summary

Radiolab Podcast Summary: "The Immortal Life of Henrietta Lacks"

Podcast Information:

• Title: Radiolab
• Host/Author: WNYC Studios
• Episode: The Immortal Life of Henrietta Lacks
• Release Date: February 21, 2025
• Hosts: Lulu Miller and Latif Nasser

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Introduction: A Personal Discovery with Global Impact

The episode opens with Lulu Miller introducing a profound story that intertwines personal tragedy with monumental scientific advancement. Henrietta Lacks, a black woman from Baltimore, unknowingly became a pivotal figure in medical science through a private moment in her bathroom that would ripple across the globe.

"It's a story that starts in a very private moment... becomes so big that it has impacted the lives of everybody listening right now."
[00:10] – Lulu Miller

Chapter One: The Mysterious Tumor

In 1950, Henrietta Lacks discovers a troubling lump in her cervix during a solo examination.

"She climbed into her bathtub and she slid her fingers up inside of her cervix and found this lump."
[02:31] – Robert Krulwich

Henrietta visits her local doctor, Dr. Howard Jones, an attending physician at Johns Hopkins University. Dr. Jones recalls the uniqueness of her tumor.

"I never saw anything like it before or after."
[03:05] – Dr. Howard Jones

The tumor is described as deep purple, shiny, and unusually soft, defying typical characteristics of cervical cancer.

The Birth of HeLa Cells

Dr. George Guy, a researcher at Johns Hopkins, receives a sample of Henrietta's tumor cells. Dr. Guy's ambition was to cultivate human cells outside the body—a challenge that had stymied scientists for decades.

"It's sort of like having a little tiny bit of a person in a lab detached from them so that you can do whatever you want with them."
[04:13] – Robert Krulwich

Despite previous failures where human cells would die in culture, Henrietta's cells thrived under Mary Toy Kubachak's care, Dr. Guy's lab assistant.

"They just kept plugging along."
[06:10] – Mary Toy Kubachak

Dr. Guy names the cell line HeLa, combining Henrietta's first and last names, although the origin of the name remains unclear for years.

Global Impact: HeLa Cells Revolutionize Science

HeLa cells proved to be "indestructible" and multiplied exponentially, making them invaluable for research. They played a crucial role during the polio epidemic of the early 1950s by enabling the development of the polio vaccine.

"At the Tuskegee Institute... they had this automatic cell dispenser."
[10:14] – Robert Krulwich

HeLa cells became the first commercialized human cells, spreading to hundreds of laboratories worldwide and underpinning countless scientific breakthroughs, including chemotherapy research and space exploration.

"HELA went into space... to see what happens to human cells in zero gravity."
[12:34] – Robert Krulwich

Henrietta Lacks: Unveiling the Woman Behind the Cells

For decades, Henrietta remained unnamed in scientific discourse. It wasn't until the late 1960s that researchers developed a genetic test to identify HeLa cells, prompting questions about the origin of this prolific cell line.

"Who was this woman? And that's when we found out her name. Henrietta Lacks."
[14:23] – Jad Abumrad

Deborah Lacks, Henrietta's youngest daughter, learns about her mother's immortal legacy. Misunderstanding the concept, Deborah fears that countless clones of her mother exist, leading to emotional turmoil.

"I would have to go talk to her, and she wouldn't know that I was her daughter."
[17:00] – Deborah Lacks

Ethical Dilemmas: Consent and Privacy

The episode delves into the ethical issues surrounding the use of Henrietta's cells without her consent. As technology advanced, the sequencing of the HeLa genome in 2013 without family consent raised significant privacy concerns.

"You can't even hide people's private information if you try."
[28:29] – Robert Krulwich

Deborah and Rebecca Skloot, author of the book "The Immortal Life of Henrietta Lacks," advocate for the family's rights and ethical treatment, leading to the establishment of the HeLa Genome Committee.

"We do not want certain information to be just broadly available publicly."
[31:26] – Rebecca Skloot

Legacy and Recognition

Post-publication of Skloot's book, Henrietta's contributions receive widespread recognition. Scholarships, honorary degrees, and various landmarks bear her name, acknowledging her pivotal role in medical science.

"Henrietta was given an honorary doctorate. Monuments, highway placards, and historical landmarks and buildings named after her."
[26:29] – Robert Krulwich

Conclusion: A Lasting Impact

The episode concludes with reflections on Deborah's relentless pursuit of her mother's story and the enduring legacy of Henrietta Lacks. Her cells continue to symbolize both scientific progress and the ongoing struggle for ethical medical practices.

"Deborah was on the verge of a stroke... she just whispered to the cells. You’re famous. But nobody knows."
[25:02] – Robert Krulwich

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Notable Quotes:

• "It's a real person."
  [08:44] – Mary Toy Kubachak

• "Nothing can stop it."
  [07:37] – Dr. Howard Jones

• "This is, like, the basic thing you need to study human biology. You need cells in a dish."
  [04:34] – Jad Abumrad

• "When you take cells out of a body, it's kind of like when you cut your fingernail off. It just doesn't."
  [21:23] – Conversation between Jad and Robert

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Themes Explored:

1. Scientific Innovation and Ethical Boundaries: The creation and proliferation of HeLa cells revolutionized medical research but simultaneously raised profound ethical questions regarding consent and the use of human tissues.

2. Racial and Social Injustice: Henrietta Lacks's story is set against the backdrop of racial inequality in medical treatment, highlighting systemic issues in healthcare.

3. Family and Identity: The Lacks family's journey to uncover their mother's identity and legacy underscores themes of memory, legacy, and the quest for recognition.

4. Privacy in the Genomic Era: The unauthorized sequencing of Henrietta's genome illustrates modern challenges in balancing scientific advancement with individual privacy rights.

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Conclusion:

"The Immortal Life of Henrietta Lacks" episode of Radiolab masterfully weaves together personal narratives, historical events, and ethical debates to present a comprehensive overview of Henrietta Lacks's enduring legacy. Through engaging storytelling and impactful quotes, the episode illuminates the profound implications of one woman's unknowingly immortal contribution to science, prompting listeners to reflect on the intersection of human rights and scientific progress.

Transcript

[Robert Krulwich]

Listener support, WNYC Studios. Hey.

[Lulu Miller]

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.

[Robert Krulwich]

Wait, you're listening. Okay.

[Jad Abumrad]

All right.

[Rebecca Skloot]

Okay.

[Jad Abumrad]

All right.

[Robert Krulwich]

You're listening to Radiolab Radio wnyclav. Rewind.

[Jad Abumrad]

Hey, I'm Jad Abumrad.

[Robert Krulwich]

I'm Robert Krulwich.

[Jad Abumrad]

This is Radiolab, the podcast. Today on the podcast Story of One.

[Robert Krulwich]

I've been wanting to do this story for.

[Jad Abumrad]

Forever. Forever, like two years ago, I think. Oh, longer than that.

[Robert Krulwich]

Yeah.

[Jad Abumrad]

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

[Robert Krulwich]

Should I. You want me talk, make noise.

[Jad Abumrad]

That's her.

[Robert Krulwich]

We can move me closer, probably.

[Jad Abumrad]

And she has been wanting to tell the story even longer, since she was in the womb. You know, I mean, she's been researching this story for 10 years.

[Robert Krulwich]

Hello.

[Jad Abumrad]

Hello?

[Robert Krulwich]

Hello.

[Jad Abumrad]

Because it is an amazing story, and confusing at times, about a tumor that begins to expand and never stop. 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.

[Robert Krulwich]

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 Abumrad]

Chapter One.

[Robert Krulwich]

First, she went into her local doctor.

[Dr. Howard Jones]

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

[Jad Abumrad]

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

[Robert Krulwich]

I'm 98. Next month I'll be 99. Wow.

[Jad Abumrad]

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

[Robert Krulwich]

Well, she was a.

[Jad Abumrad]

You don't remember anything?

[Robert Krulwich]

No, I really don't.

[Jad Abumrad]

But you remember her tumor, right?

[Dr. Howard Jones]

Oh, absolutely. I never saw Anything like it before or after.

[Robert Krulwich]

This didn't look like a normal tumor. It was. It was deep purple and about as big as a quarter, Sort of shiny, very soft. That was another thing about it.

[Dr. Howard Jones]

On examination, slightly raised when you touched it.

[Robert Krulwich]

You might think it was red jello. There was something very strange about the way it looked. There was something weird about it.

[Jad Abumrad]

So doctors took a sample.

[Robert Krulwich]

Yeah. So they would cut off these little, teeny tiny pieces. Really small, teeny tiny. A bite or two. They would take a piece, put it in a tube, and one would go to the lab for diagnosis.

[Jad Abumrad]

And in this case, since it was.

[Robert Krulwich]

Hopkins, they would take an extra piece and give it to a man named George Geye.

[Jad Abumrad]

2. So George Guy 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 time 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.

[Robert Krulwich]

Being in a dish.

[Jad Abumrad]

In a dish.

[Robert Krulwich]

George Guy had been trying to do this, working on this for decades.

[Jad Abumrad]

And why exactly?

[Robert Krulwich]

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.

[Jad Abumrad]

Oh, so this is like. This is like the basic thing you need to study human biology. You need cells in a dish.

[Robert Krulwich]

Yes.

[Jad Abumrad]

Problem was, anytime they tried to grow human cells in a dish.

[Mary Toy Kubachak]

My dog.

[Jad Abumrad]

They would die.

[Mary Toy Kubachak]

Yeah, they died.

[Jad Abumrad]

This is George Guy's former lab assistant. Can you just tell me your name? You know, my name is so and so.

[Mary Toy Kubachak]

My name is Mary. I'll put my maiden name in there. Toy Kubachak.

[Jad Abumrad]

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

[Mary Toy Kubachak]

This is it. This is Dr. Guy.

[Jad Abumrad]

She showed me some pictures, and he's sitting at.

[Mary Toy Kubachak]

At a microscope.

[Jad Abumrad]

Look at him. He looks. He seems like a really big guy, like a really tall guy.

[Mary Toy Kubachak]

He was a big guy.

[Jad Abumrad]

At least 6, 5, judging from the picture.

[Mary Toy Kubachak]

Yeah, he was.

[Jad Abumrad]

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.

[Mary Toy Kubachak]

He's like a big bear of a Man is what I always thought of.

[Jad Abumrad]

Oh, yeah. In any case, Mary says they were completely stumped at why the human cells always died, but they just did.

[Mary Toy Kubachak]

Yeah.

[Jad Abumrad]

So on the day that George Guy walked in, handed Mary a tube with a little chunk of a nameless woman's cervical cancer inside, I knew nothing about her. No one expected anything.

[Mary Toy Kubachak]

No, he was doing the. Well, he probably 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. And that's what I did.

[Jad Abumrad]

3 Then I went in and she gave the cells some food, did my usual, 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 Toy Kubachak]

They just kept plugging along.

[Jad Abumrad]

And the next. Rebecca says they doubled in size.

[Mary Toy Kubachak]

Yeah, all of a sudden, you know, I kept transferring them and making more tubes, transferring them, making more tubes, transferring.

[Robert Krulwich]

They were very reliable and stronger.

[Mary Toy Kubachak]

They just kept plugging along.

[Jad Abumrad]

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

[Robert Krulwich]

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.

[Jad Abumrad]

Your urine, but not her cells.

[Dr. Howard Jones]

And to tell us this story is a privilege to introduce Dr. George Guy.

[Jad Abumrad]

It wasn't long after that George Guy appeared on TV holding in his hand a little bottle.

[Dr. Howard Jones]

Now, let me show you a bottle in which we have grown massive quantities of cancer cells.

[Robert Krulwich]

So did you want to look at the photos?

[Jad Abumrad]

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. These are enlarged 10,000 times. Oh, my God. Swirling hurricanes of cells, just like thousands of little pots, small and some very large, clumped together.

[Mary Toy Kubachak]

Kept transferring them and making more t.

[Jad Abumrad]

See them under the microscope. Looks like something has just exploded.

[Dr. Howard Jones]

Undergoing division.

[Robert Krulwich]

That's amazing.

[Mary Toy Kubachak]

And they just kept plugging along.

[Robert Krulwich]

Keeps getting bigger and bigger, stronger.

[Dr. Howard Jones]

It's indestructible. It's indescribable.

[Robert Krulwich]

Nothing can stop it. 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 Abumrad]

4 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.

[Mary Toy Kubachak]

Oh, he sent me down to the morgue. Yeah.

[Jad Abumrad]

Really?

[Mary Toy Kubachak]

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.

[Jad Abumrad]

Meanwhile, she's like, she's lying out there.

[Mary Toy Kubachak]

She's already open. I got some samples. Coroner would take them out and give them to me.

[Jad Abumrad]

What'd she look like?

[Mary Toy Kubachak]

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 them. And that was really like, oh, this is a real person.

[Jad Abumrad]

What was it about the nail polish that hit you?

[Mary Toy Kubachak]

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.

[Jad Abumrad]

Yeah. Yeah. Over the next several months, while this woman's body lay decomposing in the ground, George Guy 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 mm. No one would actually know why he had named them that for about two decades. 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 Guy, he just passed them out freely. Didn't try and make any money off.

[Mary Toy Kubachak]

He was just a nice, nice new thing that could help science.

[Jad Abumrad]

Mary says that George Guy began to send HeLa all over the world.

[Mary Toy Kubachak]

Yep.

[Jad Abumrad]

And pretty soon she was in hundreds of labs.

[Robert Krulwich]

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

[Jad Abumrad]

This is the season when polio is at its worst. We're talking early 50s, right?

[Robert Krulwich]

Yeah. So this is 1951, 52. You know, schools are being closed, kids are being kept inside to this cruel disease.

[Dr. Howard Jones]

Medical science still has no complete answer.

[Robert Krulwich]

There was this enormous effort to develop the polio vaccine.

[Jad Abumrad]

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 Krulwich]

So what do they do?

[Jad Abumrad]

Well, one of the guys, that Guy, one of the guys, that Guy had.

[Robert Krulwich]

Sent the cells to, this collaborator, friend.

[Jad Abumrad]

Of Guy'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.

[Robert Krulwich]

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.

[Jad Abumrad]

Yeah. So now they had polio.

[Robert Krulwich]

Gila could just be a polio factory.

[Jad Abumrad]

And so the government made a factory.

[Robert Krulwich]

At the Tuskegee Institute. A real one, 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 Frankensteinish gizmos. They had this machine that was like an automatic cell dispenser, and it had this long mechanical arm. It squirt a certain amount of this culture medium filled with HELA cells into a tube.

[Jad Abumrad]

Wow. This is, like the beauty of industry right here.

[Robert Krulwich]

Yeah, it is, absolutely.

[Jad Abumrad]

The cells that were produced at this factory, she says, were used to test the polio vaccine, a potent vaccine to.

[Dr. Howard Jones]

Prevent the dreaded disease.

[Robert Krulwich]

The tests that they were doing were enormous. It was the largest field trial ever done. At its peak, the Tuskegee Hela production center was producing about 6 trillion cells a week. Wow. Which is kind of inconceivable.

[Jad Abumrad]

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

[Robert Krulwich]

Right.

[Jad Abumrad]

And that second factory was the first.

[Robert Krulwich]

Time any human biological material was commercialized.

[Jad Abumrad]

So this was the first biotech company.

[Robert Krulwich]

Yeah, basically.

[Jad Abumrad]

Okay. But when they first started mass producing Gila, what sorts of things were done to these cells? What sorts of problems were investigated?

[Robert Krulwich]

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. This was a revolution for scientists. There was research on chemotherapy drugs. HeLa cells went up in some of the first space missions.

[Jad Abumrad]

Really?

[Robert Krulwich]

Yeah. So they were.

[Jad Abumrad]

HELA went into space.

[Robert Krulwich]

HELA went into space, which every time I hear about, I think it was.

[Jad Abumrad]

Like, HELA in space. And why?

[Robert Krulwich]

I mean, just because the premise was to see what happens to human cells in zero gravity. You know, if we're going to be sending people up into space, what's going to happen to them up there? So HELA went up before any humans did, and then she eventually went up. She. The cells. There was actually.

[Jad Abumrad]

That was an interesting little slip up there.

[Robert Krulwich]

Yeah, I know.

[Jad Abumrad]

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 Miller]

That's right after this break. Lulu, Radiolab. So just before the break, we heard our wonderful reporter Rebecca Scott glute slip up a bit and call a cluster of HeLa cells.

[Jad Abumrad]

She. 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.

[Robert Krulwich]

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

[Jad Abumrad]

And she does it in the. It does it in the strangest way.

[Robert Krulwich]

HeLa cells can, you know, they can float on dust particles. They can ride on.

[Jad Abumrad]

They can what? They can float on dust particles?

[Robert Krulwich]

Yeah. So they can.

[Jad Abumrad]

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

[Robert Krulwich]

Mm.

[Jad Abumrad]

Out the door, up the stairs, down the hall. One HELA silk into a lab, drops into a dish.

[Robert Krulwich]

Cell culture where there's other cells growing. And because HeLa cells are sort of powerful cells, they take over.

[Jad Abumrad]

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. Who was this woman? And that's when we found out her name. Henrietta Lacks. This is the sound of Rebecca reading Henrietta's medical records for the first time.

[Robert Krulwich]

This is a 30 year old colored woman.

[Jad Abumrad]

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

[Robert Krulwich]

This is 2nd of November. So this is again when she was pregnant with you.

[Jad Abumrad]

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.

[Dr. Howard Jones]

I was only 15 months old and I don't remember anything about my mother.

[Robert Krulwich]

Yeah, so she, you know, she had spent her entire life just sort of longing to know who her mother was and did she like dancing.

[Dr. Howard Jones]

I always wanted to know what she liked to do, where she went, where she liked to eat.

[Robert Krulwich]

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

[Dr. Howard Jones]

Oh, 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 hold her.

[Jad Abumrad]

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 can imagine, took me by surprise.

[Dr. Howard Jones]

It really did.

[Jad Abumrad]

It was really confusing.

[Dr. Howard Jones]

I mean, how much is the. How much of ourselves is out there, you know?

[Jad Abumrad]

Eventually she went online, did some searches.

[Robert Krulwich]

And found thousands and thousands of hits.

[Jad Abumrad]

Like, for instance, on HELA clones.

[Robert Krulwich]

And Deborah had heard various journalists in the past had come to her and mentioned Dolly the cloned sheep and said, 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 Abumrad]

Yeah.

[Robert Krulwich]

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 Abumrad]

Really, you mean like a bunch of Henriettas? Thousands walking the streets, walking around. And Rebecca says that one of Deborah's biggest fears was bumping into one of these clones.

[Robert Krulwich]

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 I don't know that I could handle that. Wow, 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 is still alive. And, you know, we've grown enough of her so that it could wrap around the earth several times.

[Jad Abumrad]

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

[Robert Krulwich]

Yeah, right, exactly.

[Jad Abumrad]

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 Krulwich]

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

[Jad Abumrad]

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, for many Many years. They managed to put together a picture of who this woman was. She was born in Roanoke, 1920, Virginia.

[Robert Krulwich]

And I think she was the 10th of the 11 children, but apparently she.

[Jad Abumrad]

Was the one that stood out.

[Robert Krulwich]

Everybody talked about her as just being, you know, she was the catch.

[Dr. Howard Jones]

Oh, my goodness. I don't think I could top her.

[Jad Abumrad]

This is Sadie Sturdivan, Henrietta's cousin.

[Dr. Howard Jones]

Henny was a beautiful girl. I was beautiful myself. But Henny was very pretty. Brown eyes, long hair.

[Jad Abumrad]

And this is Henrietta's sister, Gladys.

[Dr. Howard Jones]

That tanned complexion.

[Jad Abumrad]

Everyone that they spoke with zeroed in on the same few points.

[Robert Krulwich]

Like, first, she was really meticulous about her nails.

[Jad Abumrad]

Always painted them red, this very deep red. And second, Henrietta just had this.

[Robert Krulwich]

She was very strength, forthright, very sassy.

[Jad Abumrad]

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

[Dr. Howard Jones]

Right.

[Robert Krulwich]

October, so this is when she first went in with her cancer.

[Jad Abumrad]

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

[Dr. Howard Jones]

Okay, now here's her autaki, right, about how she died.

[Robert Krulwich]

These are things I want to take notes about.

[Jad Abumrad]

Was she in a lot of pain when she died?

[Robert Krulwich]

Yeah, this was the hardest thing. She was eventually in an pretty unbelievable amount of pain. She complained of pain in the right lower quadrant. Wailing and crying and, you know, moaning for the Lord to help her.

[Jad Abumrad]

According to the records, doctors tried everything.

[Robert Krulwich]

Morphine. They injected 100% alcohol straight into her spine. Complains of pain in spite of the alcohol injection. Last, she would have these fits of.

[Jad Abumrad]

Pain.

[Robert Krulwich]

Through spasms where the 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, 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.

[Dr. Howard Jones]

Just do it. If I only just had the chance to take care of her.

[Jad Abumrad]

Now, dealing with how her mother died was one thing, but the cells made it more complicated for Deborah.

[Robert Krulwich]

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 shot up to the moon and injected with all these chemicals and irradiated and bombarded?

[Dr. Howard Jones]

You're just so knowing, you know, they had her cells on the back of a donkey Going to Turkey, you know, in the airplane, just going all over the world. I just don't know.

[Robert Krulwich]

You know, she worried about them. She worried that it hurt her mother. When you infect the cells with Ebola, does somehow her mother feel the pain that comes with Ebola?

[Jad Abumrad]

And had a scientist ever, like, sat down with her? No. Mean, just explain to her, like, this is.

[Robert Krulwich]

No, never nothing.

[Jad Abumrad]

Because it's. 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.

[Robert Krulwich]

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 Abumrad]

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

[Robert Krulwich]

There came at this point. So we were at her cousin's house.

[Jad Abumrad]

This is her cousin Gary.

[Robert Krulwich]

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

[Jad Abumrad]

You can almost hear it on the tape. She says to him, she can't carry the burden of these cells anymore. She can't do it.

[Dr. Howard Jones]

I can't turn. I don't want to turn her down.

[Robert Krulwich]

And I had been sort of trying to talk her down, and he was trying to talk her down. And then just out of nowhere, he just started singing.

[Dr. Howard Jones]

He puts food on my table. I know the Lord indeed.

[Robert Krulwich]

And he started preaching.

[Dr. Howard Jones]

There are some things that doctors cannot do.

[Robert Krulwich]

He held her head in his hands.

[Dr. Howard Jones]

And we come to you tonight the author and the finisher of our faith, and we thank you for being a waymaker. You make a path in the mighty waters you call the mountains that skip like rams and the little hills like lambs. We thank you tonight. Thank you, Lord. Thank you for that. Thank you, Lord. Thank you. Thank you. Thank you. Thank you, Jesus. Hallelujah. Hallelujah. Hallelujah. Amen. Amen.

[Robert Krulwich]

Amen.

[Dr. Howard Jones]

Amen. Thank you.

[Robert Krulwich]

Thank you.

[Dr. Howard Jones]

Amen. Thank you.

[Robert Krulwich]

And she just relaxed.

[Dr. Howard Jones]

Feel light there, Larry? I feel light.

[Jad Abumrad]

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

[Robert Krulwich]

You want to walk up and see the building?

[Dr. Howard Jones]

You want to walk? Okay. You may. He said, it's just up this hill.

[Robert Krulwich]

He had a.

[Jad Abumrad]

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

[Robert Krulwich]

So how do you feel? Fine. Yeah.

[Jad Abumrad]

And meet her mother's cells for the first time because the scientists had finally contacted her.

[Robert Krulwich]

Christoph Lingauer, the scientist who invited us into his lab to see the cells. He had projected them onto a screen. Don't be confused. They look green here. Okay. There's some 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. Kristoff turned on this screen, and she just, you know, I mean, Deborah just gasped. She just, oh, my God.

[Dr. Howard Jones]

This is about 200 times bigger than what they really are.

[Jad Abumrad]

A swirling hurricane of cells.

[Robert Krulwich]

Did you say, oh, that's my mother?

[Dr. Howard Jones]

Yeah.

[Robert Krulwich]

Pretty good for you. Yeah.

[Dr. Howard Jones]

Oh, God, yeah.

[Robert Krulwich]

Kristof gave. He gave her 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 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.

[Jad Abumrad]

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

[Robert Krulwich]

She had a heart attack and died in her sleep.

[Jad Abumrad]

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.

[Robert Krulwich]

It's like the book came out and then.

[Jad Abumrad]

Because since the publication of that book.

[Robert Krulwich]

The whole story just sort of exploded.

[Jad Abumrad]

It just took off. Scholarships were named after Henrietta.

[Robert Krulwich]

Henrietta was given an honorary doctorate. Monuments, highway placards, and historical landmarks and buildings named after her. There's a high school called Henrietta Lacks High. Gila High for short.

[Jad Abumrad]

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

[Robert Krulwich]

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 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 Abumrad]

Which is in a way what Deborah always wanted.

[Robert Krulwich]

She wanted to go to every event, she wanted to. 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 Abumrad]

But then just last year, something interesting happened. Interesting and troubling.

[Robert Krulwich]

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% 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 wander 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. 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 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. I will not tell you.

[Jad Abumrad]

Well, this report that this dude made, did he list all these things?

[Robert Krulwich]

You're so. And he sent it to me. So I called the laxes and said, you know, did you know this, anything about this? And Rebecca had called, you know, they did not.

[Rebecca Skloot]

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

[Jad Abumrad]

That was Jerry Lacks.

[Rebecca Skloot]

Jerry Lacks.

[Jad Abumrad]

Why Henrietta Lacks, granddaughter.

[Rebecca Skloot]

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.

[Robert Krulwich]

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 has asked that you take this down. And they replied immediately. They took it offline immediately. And then I contacted Francis Collins, who's 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 last woman 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.

[Rebecca Skloot]

And I say it 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.

[Robert Krulwich]

All the NIH folks drove up to Baltimore.

[Rebecca Skloot]

We googled their names. Dr. Collins and Kathy got sitting there, was like, ooh. We were kind of excited. Like, okay, yeah. We sitting in a room with the director. They all met just to listen to everybody, you know, listen to our concerns, listen to our questions. What can be done? What can't be done?

[Robert Krulwich]

The Lacks family asked about everything you could possibly imagine.

[Rebecca Skloot]

Went over, you know, the information about genome, gene mapping, sequencing, just the basic science, 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.

[Robert Krulwich]

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 going to do. There would be a committee formed that was a group of scientists and then some members of the lacks family, the HeLa genome committee, one grandchild and one great grandchild.

[Rebecca Skloot]

My brother David and my cousin Veronica.

[Robert Krulwich]

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.

[Jad Abumrad]

So they the third generation?

[Robert Krulwich]

Yeah, the Lacks family, like Jerry 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.

[Rebecca Skloot]

Yeah, it's pretty exciting. Getting. Yeah, we are stepping into the spotlight.

[Robert Krulwich]

It's the grandchildren, the third and fourth generation of Laxis.

[Rebecca Skloot]

It's the great grandchildren.

[Robert Krulwich]

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

[Rebecca Skloot]

She was the one who was just so forceful and so dedicated with getting the information out there about her mom.

[Robert Krulwich]

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, these.

[Rebecca Skloot]

High officials sitting at the table and have sincere concern about our questions.

[Robert Krulwich]

If she could have said, what do I dream might someday happen? That would be what she would have described.

[Rebecca Skloot]

I can. I can just imagine her just sitting there in the chair, just laughing, rocking back and forth, twiddling her tongue, her fingers, saying, yay. Just absorbing all of this, this excitement.

[Jad Abumrad]

And I guess this is a good time for us to say goodbye. I'm Chad Abumrad. Thanks for listening.

[Robert Krulwich]

Hi, I'm Marie Cruz and I'm from Lima, Peru. And here are the staff credits. Radiolab was created by Yat Abumrad and is edited by Soren Wheeler. Lulu Miller and Latif Nasser are our co hosts. Dylan Kieff is our director of sound design. Our staff includes Simon Adler, Jeremy Bloom, Becca Bressler, W. Harry Fortuna, David Gable, Maria Pazbutieres, Tintunyana Sambantan, Matt Kilty, Annie McEwen, Alex Nissan, Sarah Curry, Sara Sandbach, Anisa Viza, Arianne Wack, Pat Walters and Molly Webster. Our fact checkers are Diane Kelly, Emily Krieger and Natalie Middleton.

[Jad Abumrad]

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