Radiolab - Radiolab Extra: Henrietta Lacks

Episode Date: April 19, 2017

With all the recent talk about HBO's upcoming film, we decided it would be good time to re-run our story of one woman's medically miraculous cancer cells, and how Henrietta Lacks changed modern scienc...e and, eventually, her family's understanding of itself. Support Radiolab by becoming a member today at Radiolab.org/donate.    

Transcript
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Starting point is 00:00:00 Hey, this is Chad. We just wanted to throw it an extra episode into our feed in honor of a movie that we're really excited about. But first, a couple weeks ago, I stepped in here and I sort of laid out a challenge grant that we had gotten from the Tau Foundation. And the deal was, if you remember, that if 700 of you guys listening step forward
Starting point is 00:00:22 agreed to kick in $7 a month to support the making of Radio Lab, then the Tau Foundation would give us $70,000. help make the show. So again, 700 people decide to donate $7 a month. We get $70 grand. That was the deal. All right. So how did we do? How did you do? You crushed it. Just crushed it. Okay, we needed 700 people. As of right now, I think we're at somewhere over 3,000. You did so well. We did so well. The Tao Foundation just came back to us and up to the ante. full-on stretch goal because here's the thing
Starting point is 00:01:01 3,000 people is amazing but that is just a tiny percentage of the people who actually listen to this podcast so their thinking is let's capitalize on this momentum get the other 99.9% involved so their new stretch goal is that they have agreed to match any donation that comes to Radio Lab
Starting point is 00:01:20 right now up to 10 grand so if you decide to make the 7 bucks a month deal that becomes 14,000, dollars a month. If you decide to do a one-time donation of 60 bucks, that's now 120. Tau will match it. And this, just as a reminder, this is how we're able to do, you know, the year-long investigations in the police shooting or the nuclear chain of command, just to name the last three that we've done. This is how we pay for it. And this challenge grant will allow us to go farther. So, if you're down, go to radio lab.org slash match, or you can text the word match to the word match to the number 69-866.
Starting point is 00:02:00 Again, text the word match to the number 69-866. A little formal pop-up, and you can donate in a matter of seconds, and thank you. All right, so tonight is the premiere of a movie we're really excited about. It's called The Immortal Life of Henrietta Lacks.
Starting point is 00:02:23 It stars an up-and-coming actress. Maybe you've heard her. Oprah Winfrey. And it is based on the book of a very, very dear friend Rebecca Scloot, best-selling book. You'll be able to watch the movie in a couple of days on HBO. But in the meantime, we're just so proud of Rebecca. Thrilled that this movie is getting out to a wider audience because everyone should know the story.
Starting point is 00:02:48 So in honor of that, we're going to play for you a documentary we produced with Rebecca. We worked on it for a few years with her while she was sort of formulating the book. And it includes tape you won't hear anywhere else. We can move me closer. Hello, hello, hello. Now the story is about a tumor that expands and never stops. Begins in 1950, a black woman in Baltimore is in her bathroom,
Starting point is 00:03:10 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 in the side of herself and found this lump. Chapter 1.
Starting point is 00:03:41 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.
Starting point is 00:04:06 No, I really don't. But you remember her tumor, right? Oh, absolutely. I never saw anything like it before or after. And this didn't look like a normal tumor. It was deep purple and... About as big as a quarter. Sort of shiny.
Starting point is 00:04:21 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 worried about it. So, doctors took a sample.
Starting point is 00:04:35 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 a 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.
Starting point is 00:04:52 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. 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, 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. just wait to see how much they can tolerate before their cells all explode. But you can do that in cell culture. Oh, so this is like the basic thing you need to study human biology.
Starting point is 00:05:39 You need cells in a dish. Yes. Problem was, any time 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.
Starting point is 00:05:58 My name is Mary. I'll put my maiden name in there. Toy. Cuba check. Mary lives just outside of Baltimore, about an hour from where she used to work with George Guy. This is Dr. Guy. She showed me some pictures.
Starting point is 00:06:10 And he's sitting at a microscope. Look at him. 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,
Starting point is 00:06:21 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 up. Oh, yeah. In any case, Mary says they were completely stumped at why the human cells always died. But they just did.
Starting point is 00:06:34 Yeah. 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 that. Well, he probably, you know, he's ever hopeful. But, you know, I was eating lunch and I thought, oh, the heck with it.
Starting point is 00:06:52 You know, it's not going to grow. I'm going to finish a sandwich. And that's what I did. Three. And then I went in and... She gave the cells some food. Did my usual. Turned on all the machines and left.
Starting point is 00:07:04 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. They just kept plugging along. And the next. They grew a lot.
Starting point is 00:07:19 Rebecca says they doubled in size. Every 24 hours. Yeah. They just grew. All of a sudden, you know, I kept transferring them and making more tubes and transferring them, making more tubes and transferring them. making more tubes and transferring. They were very reliable.
Starting point is 00:07:32 And stronger. They just kept 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.
Starting point is 00:07:49 But not herself. And to tell us this story 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 bit of. bottle. Now let me show you a bottle in which we have grown massive quantity 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. Okay, this is the film can here, the ELL film. Then it hits you. These are enlarged 10,000 times. Oh my God,
Starting point is 00:08:24 swirling hurricanes of cells. Just like thousands of little pots. small and some very large. Slumped together. Kept transferring them and making more tubes. See them under the microscope. Looks like something has just exploded. That's amazing. And they just kept plugging.
Starting point is 00:08:41 It keeps getting bigger and bigger. Strong. It's indestructible. It's indescribable. 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.
Starting point is 00:08:59 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.
Starting point is 00:09:13 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. God was there, too, and they were standing down at her feet, sort of. Meanwhile, she's like... She's lying out there. She's already open. I got some samples.
Starting point is 00:09:33 The 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 chipped 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?
Starting point is 00:09:54 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. Yeah, yeah. Over the next several months, while this woman's body lay decomposing in the ground,
Starting point is 00:10:14 George Guy and Mary produced hundreds of thousands of her cells, her tumor cells, and he named them the heila strain. Heela? Like Heela 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, it would be unusual nowadays. Like if somebody now found a cell that was special,
Starting point is 00:10:34 they'd run off to the patent office and then sell it to Merck for a billion bucks. But George Guy? He just passed him out freely. Didn't try and make any money off. Because it was a nice, nice new thing that could help science. Mary says that George Guy began to send Hila all over the world. And pretty soon she was in hundreds of labs.
Starting point is 00:10:53 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 this 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 poliovirus, you know, enough quantity to be able to study it in a lab. And they had no way of making enough.
Starting point is 00:11:21 So what do you do? Well, one of the guys that Guy, one of the guys that Guy had sent the cells to. Yeah. This collaborator friend of guys. discovered something kind of amazing, which was that polio loved the hela cell. Put polio inside a heli cell, helo would copy, and in the process make more polio. So it's the super Xerox cell, no matter what you want to. Make a copy, make a copy, make a copy.
Starting point is 00:11:42 Yeah. So now they had a way of making polio. Hella 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.
Starting point is 00:11:58 were sort of rotated constantly autoclaves for sterilizing all their equipment. A row with, you know, all of five microscopes crazy. Frankenstein-ish for Gizmos. They had this machine that was like an automatic cell dispenser, and it had this sort of long mechanical arm. It squirt a certain amount of this culture medium filled with helicels into a tube. Wow, this is like the beauty of industry right here. Yeah, it is. Absolutely.
Starting point is 00:12:23 The cells that were produced at this factory, she says, were used to test the polio vaccine. The test that they would do were in Norse. It was the largest field trial ever done. At its peak, the Teskegee Hila Production Center was producing about 6 trillion cells a week. Wow. Which is kind of inconceivable. But that was actually only the beginning, says Rebecca, because this factory led to an even bigger one that was for profit.
Starting point is 00:12:51 Right. And that second factory was the first time any human biological material was commercialized. So this was the first first. biotech company. Yeah, basically. Okay, but when they first started mass producing HILA, what sorts of things were done to these cells? What sorts of problems were investigated? Like anything you can imagine. So they infected Hilo cells with every kind of virus. Hepatitis, equine, encephalitis, virus, yellow fever, herpes, measles, mumps, rabies, whatever. Like, you just, any vaccine. And this was
Starting point is 00:13:22 just, and this was a revolution for scientists. There was research on chemotherapy drugs. Heelot cells went up in some of the first space missions. Really? Yeah, so they were... Hila went into space? Hila went into space. Which every time I hear about, I think, they were like,
Starting point is 00:13:35 Gila 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...
Starting point is 00:13:53 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 personal. I know. Well, what happens? Okay, it's the late 60s.
Starting point is 00:14:13 And Heela has led to a revolution in science. And now there are hundreds of cell lines, not just Heela, but hundreds. And somewhere along the way, scientists discover that Heila 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 way. It does it in the strangest way. Helic cells can, you know, they can float on dust particles. They can ride on your...
Starting point is 00:14:41 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.
Starting point is 00:14:55 One helic cell into a lab. Rops into a dish. Cell culture where there's other cells growing. And because helo 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 heila or if it isn't.
Starting point is 00:15:20 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-year-old colored woman.
Starting point is 00:15:53 She's sitting with Henrietta's youngest daughter, Deborah. This is 2nd November, so this is again when she was pregnant with you. Henrietta had five kids when she died at the age of 31. Most have no memory of her because they were too young. That's especially true of Deborah. 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, what she went, where she liked to eat.
Starting point is 00:16:26 Did she breastfeed? Deborah, 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 have her hair, I tell you, just to see her and hold her. So in 1973, when a scientist calls the Lax 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,
Starting point is 00:17:00 took me by surprise. It really did. It was really confusing. I mean, how much of our cells 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 clone 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 helis 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
Starting point is 00:17:40 Googling Henrietta Lacks and clone, thought there were thousands of clones of her mother around. Really? You mean like a bunch of Henrietta's? 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 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?
Starting point is 00:18:05 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. At that point, all bets are off. 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,
Starting point is 00:18:28 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 happened. As Rebecca went off in search of Henrietta Lacks,
Starting point is 00:18:46 every so often, Deborah would come along and sit with her as they interviewed, you know, anyone they could find, friends, family, and eventually over many people. many, many years, a picture does emerge of who this woman was. She was born in Roanoke. 1920, Virginia. And I think she was the 10th of the 11 children.
Starting point is 00:19:09 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 Sturdivin, Henrietta's cousin. He was a beautiful girl. I was beautiful myself, but Heaney was very pretty beautiful. brown eyes, long hair. And this is Henrietta's sister, Gladys. That's tan complexion.
Starting point is 00:19:31 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. Fourthright.
Starting point is 00:19:46 Very sassy. Like herself. 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 went in 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.
Starting point is 00:20:07 Okay. Now here's her octa. Right. About how she died. Was she in a lot of pain when she died? Yeah, this was the hardest thing. She was eventually in an unbelievable amount of pain. She complained of pain in the right lower quadrant.
Starting point is 00:20:22 Whaling 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 would have these effects of pain. There were spasms where the waves of pain would hit her, and she would rise up out of the bed and thrash around.
Starting point is 00:20:48 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. Just to, if I only just had the chance, don't take care of her. Now, dealing with how her mother died was one thing. But the cells made it more complicated.
Starting point is 00:21:15 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? It was just so painful knowing, you know, they had her cells on the back of a donkey, going to turkey, you know, in the airplanes, just going all over the world. I just don't know. 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?
Starting point is 00:21:58 And had a scientist ever sat down with her? No. I mean, just explained to her? Like, this is... No, never. Nothing. 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.
Starting point is 00:22:15 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 Deborah's mind and build and build. There came at this point, so we were at her cousin's house. This is her cousin, Gary.
Starting point is 00:22:40 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. I can't hurt no dear. I don't want to try it down. 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.
Starting point is 00:23:06 And know the love been good, yo. I know the love been good. He put food on my table. 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 faith. And we thank you for being a waymaker.
Starting point is 00:23:43 You make a path in the mighty waters. You call the mountains that skip like rams and the looheels like We thank you tonight. Thank you, Lord. Thank you for today. Thank you, Lord. Thank you. Thank you, Lord.
Starting point is 00:24:00 Thank you, Jesus. Hallelujah! Hallelujah! Hallelujah! Hallelujah! Amen. Amen. Amen.
Starting point is 00:24:09 Thank you. Amen. Thank you. Amen. Thank you. And she just relaxed. I feel like, amen. I feel like.
Starting point is 00:24:21 She didn't realize it then, but that night, Deborah was on the verge of a stroke. You want to walk? Okay, you may... He said he's just up this hill. One of the most striking moments of the story is when the two of them visit Hopkins. That's how do you feel? Fine. Yeah?
Starting point is 00:24:41 So far so good. And Deborah meets her mother's cells for the first time. I show you that drone and I can show you the cells. Because the scientist had finally contacted her. 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? They're sort of neon green in this particular case because of the way they were stained and projected.
Starting point is 00:25:06 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. Christoph turned on this screen and she just, you know, I mean, Deborah just gasped. She just, ah. Oh, my God. There's about 200 times bigger than what they really are. A swirling hurricane of cells.
Starting point is 00:25:33 Did you say, oh, that's my mother? Yeah. Pretty good for you. Yeah. It's not believe. Yeah. Yeah. No.
Starting point is 00:25:46 Christoph 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 were very cold, and she sort of, you know, rubbed her hands together with the vial in her hands, to sort of warm them up and sort of blew on them to keep them warm. And then she just sort of whispered to the cells. It was sort of incredible. She just raised them up to her lips and she said, you're famous, but nobody knows it.
Starting point is 00:26:22 Just a week before Rebecca and I spoke in the studio, she got a call that Deborah had died. She had a heart attack and died in her sleep. Okay, so as you may know at this point, that segment was based on Rebecca. Rebecca Scloot's book, The Immortal Life of Henrietta Lax. It's in an amazing book. It came out right when we released that piece.
Starting point is 00:27:00 It's been a couple of years now. And recently, we met up with Rebecca in Chicago just to get an update. It's like the book came out. 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.
Starting point is 00:27:19 Highway placards and historical landmarks and buildings named after. her. There's a high school called Henry Lax High, Heela High for short. Meanwhile, the book is exploding. She went on this like insane book tour. Members of the Lax family began to join her. It started off with just Sunny Lax would go and do a sort 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 a drug that your mother's cells helped develop her. You know, I do this in my
Starting point is 00:27:53 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 Leila 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
Starting point is 00:28:31 they did what? Because within the Gila 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 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 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,
Starting point is 00:29:15 essentially, a report on Henrietta's genes. You have X percent chance of bipolar disorder. alcoholism, obesity, 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. But I will not tell you. Well, this report that this dude made,
Starting point is 00:29:41 did he list all of these things you're describing? And he sent it to me. So I called the laxes and said, you know, did you know anything about this? 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 Lax? Jerry Lax. Why?
Starting point is 00:30:03 Enrieta Lax's granddaughter? 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. You know, their first question was, can you get them to take it down?
Starting point is 00:30:35 And so we can figure out what it is, what it means. So I reached out to the scientists and said, the Lax 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 head of the family. 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 lack of women and get consent. Somebody
Starting point is 00:31:06 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 son, sister, my dad, my uncle, my brother David, my sister Kim, my cousin Ron, Rebecca Scloot. 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.
Starting point is 00:31:35 It was like, oh, 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. 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 met to science.
Starting point is 00:32:03 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... The 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. It said, this is the research we're going to do.
Starting point is 00:32:33 There would be a committee formed that was a group of scientists and then some members of the Lax family. The Heelagino 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
Starting point is 00:32:57 news. So they, the third generation. Yeah, the Lax family, like Jerry Lax 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 Laxas. It's the great-grandchildren. This is their story now. And that's, you know, the other thing that is an undercurrent for 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.
Starting point is 00:33:35 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 speaker phone 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 had just laughing, rocking back and forth, twiddling her tongue, her fingers saying, yay.
Starting point is 00:34:15 Just absorbing all of this, this excitement. Before we close, I want to thank Rebecca Scloot for giving us her raw tapes. Her book, The Immortal Life of Henrietta Lacks, is truly spellbinding. You can get more information at radialab.org. Sign up for our podcast there. RadioLab.com. Hello, this is Rebecca Scloot. Radio Lab is produced by Jab, Abimred.
Starting point is 00:34:51 Our staff includes Ellen Horn, Michael Raphael, Zorin Wheeler, Lulu Miller, Tim Howard, and Pat Walters. With help from Adi Narayan, Aaron Sand, and Sharon Shattuck. Special thanks to Tim Clark and Timothy Wisniewski. With a name like Sclud, I'm allowed to stumble on people's last names.

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