Radiolab - The Immortal Life of Henrietta Lacks

Episode Date: February 21, 2025

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 SklootSignup for our newsletter!! It includes short essays, recommendations, and details about other ways to interact with the show. Sign up (https://radiolab.org/newsletter)!Radiolab is supported by listeners like you. Support Radiolab by becoming a member of The Lab (https://members.radiolab.org/) today.Follow our show on Instagram, Twitter and Facebook @radiolab, and share your thoughts with us by emailing [e-mail] 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.

Listener supported, WNYC Studios. 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, the story of one of the most important people in the history of medical science, who was almost erased from the record. erased from the record. Yeah, wait, you're listening. Okay. Okay. Alright.

You're listening to Radiolab. Radiolab. From WNYC. WNYC. Rewind. Rewind. Hey, I'm Jada Boomerod. I'm Robert Krulwich. This is Radiolab. The podcast. Today on the podcast, a story of what I've been-

We've been wanting to do this story for- Forever. Forever. Like two years ago, I think. Oh, longer than that. Yeah. It's a story that comes from a friend of mine, Rebecca Skloot.

Should I give me a talk? Make noise? That's her. We can move me closer, probably. And she has been wanting to tell this story- Even longer. Since she was in the womb. You know what I mean?

She's been researching this story for 10 years. Hello, hello, hello. Because it is an amazing story, confusing at times. 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. Hello, hello, hello. Because it is an amazing story, and confusing at times, about a tumor that begins to expand. Okay.

And never stop. 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. 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 womb. And she climbed into her bathtub and she slid her fingers up inside of her cervix and found this lump. Chapter one. First she went into her local doctor. By chance, I happened to be an attending at that time. The guy she eventually ended up seeing

at Johns Hopkins University was this fellow, Dr. Howard Jones. I'm 98, next month I'll be 99. Wow. So when she came in to see you, can you tell me anything about what she was like? Well, she was a... You don't remember anything? No, I really don't. But you remember her tumor, right?

Oh, absolutely. I never saw anything like it before or after. This didn't look like a normal tumor. It was deep purple. About as big as a quarter. Sort of shiny. Very soft. That was another thing about it on examination. Slightly raised. When you touched it, you might think it was red jello. There was something very strange about the way it looked. There was something weird about it.

So doctors took a sample. Yeah, so they would cut off these little teeny tiny pieces. Really small. A bite or two. They would take a piece. Put it in a tube. And one would go to the lab for diagnosis. And in this case, since it was Hopkins,

they would take an extra piece and give it to a man named George Guy. Two. So George Guy 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.

In a dish. In a dish. George Guy had been trying to do this, working on this for decades. And why exactly? 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 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... Oh, so this is like the basic thing you need to study human biology. You need cells in a dish. Yes. The problem was, anytime they tried to grow human cells in a dish... They would die. Yeah, they died. This is George Guy's former lab assistant.

Can you just tell me your name? You know, my name is so and so. My name is Mary. I'll put my maiden name in there. Toy Kubitschek. Mary lives just outside of Baltimore, about an hour from where she used to work with George Guy. This is Dr. Guy. Would you show me some pictures? And he's sitting at a microscope. Look at him, he looks, he seems like a really big guy, like a really tall guy.

He was a big guy. At least 6'5", judging from the picture. Yeah, he was. And in every slide that she showed me, he had kind of a crazy smile on his face, like he's having a good time. He was like a big bear of a man, is what I always thought of.

Oh yeah. In any case, Mary says they were completely stumped at why the human cells always died. But they just did. 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. 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. That's what I did. Three. 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.

They were growing. And then the next day. And they were growing. And then the next day. Still growing. They just kept plugging along. And the next. Rebecca says they doubled in size. 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 and stronger. They just kept plugging along. Plugging along. Meanwhile, the woman who had spawned all these cells died. 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. Plugging along. But not her cells. And to tell us this story, it is a privilege to introduce Dr. George Guy. It wasn't long after that George Guy appeared on TV, holding in his hand a little bottle. Now let me show you a bottle in which we have grown massive quantities of cancer cells. 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. OK, 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 pods. Some small and some very large. Plumped together. Kept transferring them and some very large. Flunked together. Kept transferring them and making more tubes. See them under the microscope. Looks like something has just exploded. Plugging along. Undergoing division.

That's amazing. And they just kept plugging along. Keeps getting bigger and bigger. Strong. It's indestructible. It's indescribable. Nothing can stop it. ["The Last Supper"]

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. Four. 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.

Oh, he sent me down to the morgue, yeah. Really? 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. Meanwhile, she's like what? She's lying out there. She's already open. I got some

samples. Coroner would take them out and give them to me. What did she look like? 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 chip nail polish on them and that was really like oh this is a real person. What was it about the nail polish that hit you? Oh, cause it was chipped. Cause 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's showed that she was proud of herself.

Not everyone wears nail polish on their toes. 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. 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 of it. Because it was a nice, nice new thing that could help science. Mary says that George Guy began to send HeLa all over the world. And pretty soon she was in hundreds of labs. And you know this was in the midst of the polio epidemic. This is the season when polio is at its worst. We're talking early 50s right? Yeah so there's 1951, 52 you know schools are being closed, kids are being kept inside. To this cruel disease medical science still has no complete answer. There was this enormous effort to develop a polio vaccine.

The 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 Guy, one of the guys that Guy had sent the cells to, this collaborator friend of Guy's, discovered something kind of amazing amazing which was that polio loved the Gila cell. Put polio inside a Gila cell, Gila 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. Gila could just be a polio factory. And so the government made a factory. But 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 Frankenstein-ish gizmos.

They had this machine that was like an automatic cell dispenser and it had this long mechanical arm. It squirted a certain amount of this culture medium filled with helo cells into a tube. Wow this is like the beauty of industry right here. Yeah it is absolutely. The cells that were produced at this factory she says were used to test the polio vaccine. The potent vaccine to prevent the dreaded disease. The tests that they were doing in North, it was the largest field trial ever done. At its peak, the Teskegee HeLa production center

was producing about six trillion cells a week, which is kind of inconceivable. But that was actually only the beginning, says Rebecca, because this factory led to an even bigger one. It was for profit. Right. And that second factory only the beginning, says Rebecca, because this factory led to an even bigger one that was for profit. Right. And that second factory was the first time any human biological material was commercialized. So this was the first biotech company?

Yeah, basically. Okay, but when they first started mass producing Hela, what sorts of things were done to these cells? What sorts of problems were investigated? 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, this was a revolution for scientists. There was research on

chemotherapy drugs. HeLa cells went up in some of the first space missions. Really? Yeah so they were... HILA went into space? HILA went into space. Every time I hear it, I think it's like, HILA in space! In space! Why? 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 HILA went up before any humans did. And then she eventually went up, she...the cells, there was actually... That was to happen to them up there? So Hila went up before any humans did. And then she eventually went up. She... The cells, there was actually...

That was an interesting little slip up there. Yeah, I know. 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. That's right, after this break. Lulu, Radiolab. So just before the break, we heard our wonderful reporter, Rebecca Skloot,

slip up a bit and call a cluster of Gila cells, She. Okay, it's the late 60s. Mm-hmm. 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. Yeah.

And she does it in the, it does it in the strangest way. Helocells can, you know, they can float on dust particles. They can ride on you. They can what? They can float on dust particles? Yeah, so they can. You mean they can hop out of a dish and just get on a particle and just float?

Mm-hmm. Out the door. Up the stairs. Down the hall. Yeah, so they can... You mean they can hop out of a dish and just get on a particle and just float? Out the door? Up the stairs? Down the hall? One HeLa cell... Into a lab? ...drops into... Into a dish?

...cell culture where there's other cells growing. And because HeLa cells are sort of powerful cells, they take over. 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. This is the sound of Rebecca reading Henrietta's medical records for the first time. This is a 30- old colored woman. She's sitting with Henrietta's youngest daughter Debra. This is 2nd of November, so this is again when she was pregnant with you. Henrietta had 5 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 Debra. I was only 15 months old and I don't remember anything about my mother.

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? You know, I always wanted to know what she liked to do, where she went, what she liked to eat. Did she breastfeed Debra? She was really sort of almost fixated on that idea. She wanted to know if she was breastfed. Oh, I don't know. 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. 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. It took me by surprise. It really did. It was really confusing. I mean, how much of ourselves is out there, you know? Eventually she went online, did some searches, and found... Thousands and thousands of hits. Like for instance on Gila clones.

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 Gila 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. Yeah. So Deborah, between what journalists had told her and Googling Henrietta Lacks in clone, thought there were thousands of clones of her mother around. 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 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 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 said, hey, part of her's still alive, and we've grown enough of her so that it could wrap around the Earth several times.

At that point, all bets are off, I would say. Yeah, right. Exactly. 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 then 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. Debra 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. She was born in Roanoke, 1920 Virginia, and I think she was the tenth of the eleven children. But apparently she was the one that stood out. Everybody talked about her as just being, you know, she was the catch. Oh my goodness, I don't think I could top her. This is Sadie Sturdivant, Henrietta's cousin. Henrietta was a beautiful girl. I was beautiful myself, but Henrietta was very pretty. Brown eyes, long hair.

And this is Henrietta's sister, Gladys. Nice tan complexion. Everyone that they spoke with zeroed in on the same few points. Like first, she was really meticulous about her nails. Always painted them red. This very deep red. And second, Henrietta just had this. She was very.

Strength. Forthright. Very sassy. 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. Right October. So this is when she first ran in with her cancer. But in that hotel room, when the two of them were flipping through the medical records,

they did start to get some detail. Okay, now here's her otachi. Right. About how she died. These are things I want to take note of. Was she in a lot of pain when she died? Yeah, this was the hardest thing. She was eventually in a 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. According to the records, doctors tried everything. Morphine, they injected 100% alcohol straight into her spine. Wow. She complained of pain, despite of the alcohol injection last week. She would have these fits of pain. Aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa- , along with one of her friends. out of the bed and thrash around. So they strapped her to the bed and her sister,

along with one of her friends, 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. Just to, if I only just had the chance to take care of her. Now, dealing with how her mother died was one thing. But the cells made it more complicated. 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 shot up to the moon and injected with all these chemicals and irradiated and bombarded. It was just so painful knowing they had her cells on the back of a donkey going to Turkey,

in the airplane, just going all over the world. I just don't 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? And had a scientist ever like sat down with her? No.

No. You mean just explain to her like this is? No, no, never. Nothing. Because it's just strikes me that it wouldn't be that hard to explain it like when you take cells out of a body, it's kind of like when you cut your fingernail off. It just doesn't...

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

And build. There came at this point, so we were at her cousin's house. This is her cousin, Gary. She was broken out in hives and she was telling him all the stuff that she'd recently learned. 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.

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. And he started preaching. There are some things that doctors cannot do. He held her head in his hands. And we come to you tonight, the author and the finisher of our thing. And we thank you for being a way maker.

You make a path in the mighty waters. You call the mountains a 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 Lord.

Thank you. Thank you Jesus. Hallelujah. Hallelujah. Hallelujah. Amen. Amen. Thank you Jesus.

Thank you. Amen. Thank you Jesus. Thank you Jesus. Thank you Jesus. Thank you Jesus. Amen. Amen. Thank you. Thank you. Amen. Thank you. And she just relaxed. I feel light, Mary.

I feel light. Ah! She didn't realize it then, but that night, Deborah was on the verge of a stroke. You want to walk up and see the building? You want to walk? He said he's just up this hill. One of the last things the two of them did together was to visit Hopkins.

So how do you feel? Fine. Yeah? So far so good. And meet her mother's cells for the first time. I'll show you that room and I can show you the cell. Okay. Because a scientist had finally contacted her. I'll show you that room and I can show you the cells. Because a scientist had finally contacted her.

Christoph Lengauer, 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? 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. Christophe turned on this screen and she just, you know, I mean, Deborah just gasped. She just, oh. Oh my God. This is about 200 times bigger than what they really are.

A swirling hurricane of cells. Did you say, oh, that's my mother? Yeah. Pretty good, pretty ugly. It's not me. Yeah, yeah. No. Oh, God.

Yeah. Christophe 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 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. ["The Last Supper"] Just a week before Rebecca and I spoke in the studio, she got a call that Debra had died. She had a heart attack and died in her sleep. OK, so as you may know at this point, that segment was based on Rebecca Scloot'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. It's like the book came out and then... Because since the publication of that book... The whole story just sort of exploded. Recently we met up with Rebecca in Chicago just to get an update. It's like the book came out and then... Because since the publication of that book... The whole story just sort of exploded... It just took off.

Scholarships were named after Henrietta. 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. Meanwhile the book is exploding. She went on this like insane book tour. Members of the Lacks family began to join her. There's a high school called Henrietta Lacks High, Keele High for short. Meanwhile the book is exploding. She went on this like insane book tour. Members of the Lacks family began to join her. It started off with just Sonny Lacks would

go and do a sort of onstage Q&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 sells help develop her you know I do this in my lab I mean they just it never stopped it was just a flood which is in a way what Deborah always wanted 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. But then just last year something interesting happens interesting and troubling. So yeah so March 2013 this group of scientists from Germany sequenced the Heal A 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 Henrida'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. And I believe that they believe this. But this is a misconception.

You can, in fact, learn about people, and in fact 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 her family. But I will not tell you. Well, this report that this dude made, did he list all of these things you're describing? Yes.

So, and he sent it to me. So, I called the laacks and said, you know, did you know anything about this? And Rebecca had called. You know, they did not. And it kind of bothered us because we're saying, okay, why wasn't a family involved with this decision making? That was Jerry Lacks.

Jerry Lacks, why? Henrietta Lacks' granddaughter. 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. 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 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. 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. All the NIH folks drove up to Baltimore. We Googled their names. Dr. Collins and Kathy got sitting there. It was like, oh, we were kind of excited. Like, OK, 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? The Lacks family asked about everything you could possibly imagine. Went over, you know, the information about genome,

gene mapping, sequencing. Just the basic science of genomes. 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. 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.

The Gino committee. One grandchild and one great grandchild. My brother David and my cousin Veronica. 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 the third generation? Yeah, the Lacks family. Like Jerry Lacks was on MSNBC live doing an interview about this and she you know she'd never

done this before and you know they were in every newspaper. I mean, it was everywhere. Yeah, it's pretty exciting. Yeah, we are stepping into the spotlight. It's the grandchildren. The third and fourth generation of laxes. It's the great grandchildren. This is their story now. And that's, you know, the other thing that is an undercurrent through all this is Deborah's gone. She was the one who was just so forceful and so dedicated with getting the information out there about her mom. 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 Debra. But this the first meeting sitting on this speakerphone listening to this meeting.

These high officials sitting at the table and have sincere concern about our questions. If she could have said, what do I dream might someday happen? That would be what she would have described. I can just imagine her just sitting there and she just laughing, rocking back and forth, twiddling her fingers saying, yay. Just absorbing all of this excitement. I guess it's a good time for us to say goodbye. I'm Chad Abumrad. Thanks for listening. Hi, I'm Maricruz and I'm from Lima, Peru.

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