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So tonight i'm pleased to welcome rebecca skloot. She's with us tonight to speak on her book. The immortal life of henrietta lacks. Often we forget that behind our daily medicine. Treatments and life saving procedures there are human stories and struggles. Mysql details two very different worlds. That of a scientific community. And of mrs lacks immediate family. To reveal the staggering effects of a fascinating study. And a controversial practice. The case of henrietta lacks is arguably one of the more spectacular examples of just how intertwined these two worlds can be. kirkus reviews states that the more like immortal life of henrietta lacks is a well paced vibrant narrative. Equal parts intimate biography and brutal clinical reportage. Scoots graceful narrative adeptly a deathly navigates the wrenching black family recollections and the sobering. Overarching realities of poverty and pre civil rights racism. The author's style is matched by methodical. Scientific rigor and manifest expertise in the field. Miss clues award winning science journalist whose essays and stories have been widely published and anthologized. She's a contributing editor for popular science and has worked as a correspondent for p.b.s. is nova series
as well as for n.p.r.'s radio lab. She frequently. Contributes the new york times new york times magazine and discover magazine. She currently teaches creative nonfiction in the m.f.a. program at the university of memphis. So now you please join me in welcoming back this week. Thank you thank you all for brazing braving this horrible historic blizzard. To come out tonight. I'm really excited to be here and to see a bunch of familiar faces in the audience so they're excited to say hello to you. I'm losing my voice. I've been talking nonstop for the last week in interviews and giving talks. So i may have to stop and hack every once in awhile. I'm very excited because they have to. T.. And that's like the greatest thing. So i'm going to give you guys just sort of an overview of the book to start. And i mean a re a couple sections from it as i go. And then. Will be questions. Which
is my favorite part. Just out of curiosity. Anyone in this room worked with us l's. In their labs. Very good very good. Had a feeling there might be a few of you. Ok so. Henrietta lacks. Was a poor african-american. Tobacco farmer. From a small town in southern virginia. Who at the age of thirty. Found a tumor. And i'm going to actually read you the scene in which she's. She first. Goes to the doctor for this tumor. And then i'll tell you the story behind. What happened next. On january twenty ninth. One nine hundred fifty one. David lax sat behind the wheel of his old buick. Watching the rain fall. He was parked under a towering oak tree outside johns hopkins hospital. With three of his children. Two still in diapers. Waiting for their mother. Henrietta. A few minutes earlier she jumped out of the car pulled her jacket over head and scurried into the hospital.
Past the colored bathroom. The only one she was allowed to use. In the next building. Under an elegant domed copper roof. A ten and a half foot marble statue of jesus stood. Arms spread wide. Holding court over what was once the main entrance of hopkins. No one in henrietta's family ever saw hopkins dr without visiting the. Jesus statue. Laying flowers at his feet. Saying a prayer. And rubbing his big toe for good luck. But that day henrietta didn't stop. She went straight to the waiting room of the gynecology clinic. A wide open space. Empty but for rows of long straight back benches that looked like church pews. I get a knot on my womb. She told the receptionist. The doctor need to have a look. The day before. Henrietta went to the bathroom and found blood spotting her underwear. She filled her bath tub. Lowered herself into the warm water and slowly spread her legs. With the door closed her children. Husband and cousins. Henrietta slid a finger inside herself.
And rubbed it across her cervix. Until she found what she somehow knew she'd find a hard lump. Deep inside. As though someone had lodged a marble. Just to the left of the opening to her womb. Henrietta climbed out of the bath tub dried herself off and dressed. Then she told her husband. You better take me to the doctor. I'm bleeding. And it ain't my time. Hopkins was one of the. One of the top hospitals in the country. It was built in eight hundred eighty nine as a charity hospital for the sick and poor. And it covered more than a dozen acres where a cemetery an insane. Sane asylum once sat in east baltimore. The public wards at hopkins were filled with patients. Most of them black and unable to pay their medical bills. David drove henrietta nearly twenty miles to get there. Not because they preferred it. But because it was the only major hospital for miles that treated black patients. This was the era of jim crow. When black people showed up at white only hospitals. The staff was likely to send them away. Even if it meant
they might die in the parking lot. Even hopkins. Which did treat black patients. Segregated them into colored wards and had colored only fountains. So when the nurse called henrietta from the waiting room. She led her through along. A single door. To a colored. Only exam room. One in a long row of rooms. Divided by clear glass walls. That let nurses see from one to the next. Henrietta under arrest. Wrapped herself in a starched white gown and lay down on a wooden exam table. Waiting for her jones. The gynecologist on duty. Jones was thin and graying. His deep voice softened by a faint southern accent. When he walked into the room. Henrietta told him about the lump. Before you salmon here. He flip through a chart. A quick sketch of her life and a litany of untreated conditions. Six or seven straight education. Housewife and mother of five. Patient had one tooth ache for nearly five years. Only anxiety is oldest daughter who is epileptic and can't talk. Happy household. Very casual drinker.
Well nourished cooperative. Patient was one of ten siblings. One died of car accident. One from rheumatic heart. One was poisoned been with her with husband since age fourteen and has no liking for sexual intercourse. Patient has asymptomatic neuro syphilis. But cancelled syphilis treatments. Said she felt fine. Two months prior to current visit. After delivery of fifth child. Patient had significant blood and urine tests showed areas of increased cellular activity in the cervix. Physician recommended diagnostics and referred to specialists for ruling out infection or cancer patient cancelled appointment. It was no surprise she can come back all those times for follow up for henrietta. Walking into hopkins was like entering a foreign country where she didn't speak the language. She knew about harvesting tobacco and butchering a pig. But she'd never heard the word cervix. Or biopsy. She didn't read or write much. And she hadn't studied science in school. She. Like
most black patients. Only went to hopkins when she thought she had no choice. Jones listened as henrietta told him about the pain. The blood. She lay back on the table. Feet pressed hard in stirrups. As she stared at the ceiling. And sure enough joan found the lump. Exactly where she'd said he would. He described it as an eroded hard mass. About the size of a nickel. If her cervix was a clockface the lump was at four o'clock. He'd seen easily a thousand cervical cancer lesions but never anything like this. Shiny and purple like great jello he wrote later. And so delicate it bled. The slightest touch. Jones cut a small sample and send it to the path ology lab down the hall for diagnosis. Then he told him he had to go home. Soon after he sat down and dictated notes about henrietta enter diagnosis. Her history is interesting in that she had a term delivery here at this hospital. September nineteenth one thousand nine hundred fifty he said.
No no it is made in the in the history at that time. Or at the six weeks return visit. That there's any visible abnormality of the cervix. Yet here she was three months later. With a full fledged tumor. Either her doctors had missed it during her last exams. Which seemed impossible. Or it had grown at a terrifying rate. So henrietta went home and. A few days later. Her doctor got her biopsy back in the lab saying it was invasive cervical cancer. And he called her back in for the standard treatment of the day which was to take. Tubes of radium. Which is you know radioactive material. And essentially so it to the surface of the cervix. To sort of burn off the cancer they still do that in some cases but it's not commonly used today. So she came back into the hospital for her next treatment and. The doctors put her in under anesthesia. And without telling her. Before applying the radium. Her doctor took a piece of her tumor. And put it into a dish and sent it down the hall to this. To george guy who was the head of tissue culture research at
hopkins and. Guy had been trying to grow cells in culture for about thirty years. And it had never worked. Periodic lee they would grow. Maybe for a few weeks. But they all eventually died. And there was a whole field of research. Sort of devoted to trying to keep. Grow in a mortal human cell line. Cells that would just survive indefinitely in culture. That scientists could use to do. Essentially anything. You know anything they wanted to them they could use them to study viruses to study cancer. At that point. There wasn't. They didn't know a lot about even just the basic mechanics of cells we didn't know what d.n.a. was. So this idea. That if you can keep them alive in culture. We can do amazing things which was true. But no one succeeded. Until henrietta. So. That little piece of her tumor. That her doctor. Took about two days later. Just started to grow and. It began doubling they begin doubling their numbers every twenty four hours. Which was no one had ever seen anything like this before. They would fill the tubes that they were in and. Dishes and their. Guide lab assistant
would separate them into more dishes they would fill those dishes and she separate them and separate them and. Suddenly she had like piles of these things. And pretty soon george guy. Said to his some of the colleagues like. You know hey i think we actually have the first immortal human cell line. And all of his colleagues said. Great can i have some. And so guy began sending her cells out to really anyone who wanted to use them in research. And it's time you couldn't just. Order cells by mail like you do today anything anybody can go online buy some cells. You can get them in the mail the next day. Guy would take tubes of her cells and go to the airport. And convince. Pilots and flight attendants to put them in their pockets and fly them to whatever city he needed the cells to get to. And then on the other side would be a scientist waiting for it to run back to the lab and put them in culture and grow them. So pretty soon. Her cells. Started sort of spreading all over the world. This way and. This was this. So they although they also grew like this in her body so she went from having a nickel
sized tumor. At the age of thirty and. About seven months later. Almost every organ in her body was taken over by tumor. So something about her cells. And this cancer. Grew with. Unbelievable. Sort of power. So she died. Eight months after her diagnosis and. Her family never knew that these cells were taken she had five kids and she died and. They just sort of went on with their lives which were very difficult. Lives. Lived in a lot of poverty and. For a lot of years they just had no idea this happened and henrietta's cells went on to become one of the most important things to happen to medicine in this. You know sort of this era. They were used to help develop. The polio vaccine. They went up in the first space missions to see what would happen to human cells in zero gravity. They were the first cells ever cloned. The first cells. Frozen and thawed. Which was an incredibly important development. If we didn't have that we wouldn't have. You know in vitro fertilization and. You know. Stem cell research and so much of what we have today.
They were used to help create some of our morse most important cancer medications. They were used to develop drugs for parkinson's disease and study. Everything from lactose intolerance to like. The effects of. Working in sewers and mosquito mating and just this sort of endless list of stuff. And as part of. All of that a factory was set up. To mass produce or cells. So this was this incredible thing for science they've been waiting for cells like this. Everybody wanted them. And. So a center. Opened up at the testee institute. And they began growing them. To the tune of about three trillion cells a week. And shipping those to labs all over the world and. That was a nonprofit center. Pretty soon the first for profit. Tissue bank. First for profit company opened and started growing. These cells and selling them. And that sort of. Launched what is now of a very large industry of. You know. Selling cells and tissues and you know patenting genes and all sorts of stuff. So they started with herself. So in the late sixty's
early seventy's. Still no one had actually grown. Cells quite like henrietta cells. A lot of other cells were able to grow. But there was never anything quite like hers. To do to find out more just sort of study her cells. A group of scientists decided to track down her kids. So this is very early days of gene mapping. And this group of scientists. This figured that if they could get d.n.a. samples from her children. They could. They could use them to study heal cells. So. A scientist called. Her family her husband one day. Her husband had a third grade education. He was. You know he didn't know what a cell was. And the way he understood the phone call was essentially. We've got your wife. She's alive in a laboratory. We've been doing research on her for the last twenty five years. And now we have to test your kids to see if they have cancer. Which wasn't what the doctor said at all but. He actually you know his understanding of. A cell was the prison cell. He thought they
had her. In a cell and. It also made sense that these doctors. The scientists were coming to them at that particular time her daughter their daughter. Deborah was twenty six years old and she'd always sort of known. She knew her mother died around thirty. No one ever talked about henrietta she didn't know what her mother died from. And she always just assumed she would die at thirty. As well so she lived her whole life in fear of her thirtieth birthday. And here she was sort of getting close to it in the doctor show up saying it's time to test you. And. So just sort of made perfect sense to the family. So the scientists came and took samples and left. And the family waited for the test results and they never came. And they would call the switchboard. At hopkins and say well we're called calling for a cancer test results and. Poppins. Operator would have no idea what they were talking about and. And then periodically the scientists would come back because other scientists would hear that someone had access to the family and so they would come back and get more samples from the family and send those to someone else who wanted to do research on the healer cells. Using the samples. So her family so we got sucked
into this world of research that they didn't understand. And the scientists didn't realise the family didn't understand and it started this saga for the family. And there it was very emotional for different reasons for the kids so. Deborah. The daughter. You know she is a very she's a very deeply religious or spiritual and she very much believe that her mother's soul. Alive in these cells. And that. And this was very disturbing to her this idea that you know. Can her mother rest in peace. If parts of her being shot up to the moon and. Injected with chemicals and. Did that hurt her somehow physically years. So that spiritually. Devers brothers were more. Were more concerned about the money. So her family. To this day can't afford health insurance. They don't have access to the medical developments that their mother cells helped to create. And at the time one of them was living on the streets. Homeless and he was actually volunteering for research studies in order to get enough money to get glasses or
to have a bed to sleep in for a few nights. So when they heard that parts of their mother were being bought and sold. They were angry and. They sort of started a campaign to get someone to give them some of that money but didn't really have sort of the means to do it. They can just go out and hire a lawyer. They didn't know who to go talk to. So they would start. You know making flyers and hanging them around baltimore. You know. Johns hopkins stole these things from my mother and they owe us money and. No one sort of. Paid attention. So flash forward another twenty five years. In the late ninety's i came along. At this point a lot of people had come before me different researchers wanting to do research on them. Some journalists. Had come along at one point. So i got a hold of her mother's medical records and published them there were sort of a lot of. Very traumatic things that happened to the family. When i came along it's i was in my late twenty's. A graduate student thinking i'm going to write a story with this woman. He sells like he's a really cool. And i had
no idea what the family had been through and. I just knew about the cells and. So i called them. Thankfully one day and said that i wanted to write about her and they just went. Yeah right. Basically just. They wouldn't talk to me for about a year and a half. And eventually i had won their trust and part of how i did that was. By still. When i came along still no one had told them what a sell was so they realized that she wasn't alive somewhere like they couldn't go visit her. But they still weren't totally clear on what was what was alive. And what it meant. And it was also very clear deborah was two when her mother died and it was very clear that she wanted desperately to know who her mother was. And to sort of. You know learn her mother's story and to understand the cells to kind of get over her. The loss of her. So i. I sincerely started. Sort of. Share. I would share my research materials with her so i would go and learn there's things about her mother and i would leave ois messages on her voicemail. You know saying hey you know i
just met your cousin cliff and i heard this great story about your mom when she was a little kid and i just sort of tries. Trying to just give her information which seemed like what she wanted. So mentally she. She agreed to start talking with me and. She one of the first things she said was you know. You just can't hide anything from me. I want to know. Whatever you learn. Which was part of what i had. I had actually told her that she could come with me when i do my research is like we'll go to scientific laboratories we will go. So learn this stuff so. The book. Traces. The states really spanned about a hundred here period. Which i didn't realize until a reviewer pointed that out i was like wow really. Hundred years. So it tells the story of the heal itself and you can trace a lot of. Sort of the big landmarks in modern medicine just by looking at. Research done on her cells. Tells henrietta's. Life story. And the story of her family. Sort of involved. Their involvement with science but then it also becomes a sort of travel story. Of deborah and i going around and her essentially trying to learn. The story of her mother and kind of find some sort of peace with it.
So i mean to read one more section. One more scene from the book. And this comes. So one of the first things we did. It was. We went into a laboratory to see the. Cells for the first time. And so in order to understand this sort of follows after just a few pieces of information you need so. Christoph. Is a scientist. Christoph lingo or he was a johns hopkins hospital. And he read a story that i did in hopkins magazine. Where i just laid out the very basics of henrietta story line. And he contacted me saying what now a lot of scientists say. When they hear the story which is essentially. Oh my god i had no idea. You know i've been working with these cells in my lab. You know my whole career and. You know. I have done all of this research with them and i never. I had no idea where they came from i had no idea.
She didn't know and. You know a lot of scientists just don't even. Wonder they're just they're you know they're out there test tubes in the labs of the lab my. Mice there's. Fruit flies and there's healing and it's just sort of part of the ambiance in the lab they're just they're everywhere. So. Most scientists haven't even wondered where they came from. So he sent me this email essentially saying. You know i want to do something. I want to thank the family i. You know maybe want to kind of apologize for what science. Did and. So it took a long time to convince ever to do this but eventually i brought her into kristoff lab where he was going to show them. Her. Deborah and one of her brothers the cells for the first time and sort of start teaching them the basics. The basic biology of them. So this is the scene. When we first show up to the lab. And the only other thing you need to know is the kharia. Is. Deborah's younger brother. And there's a reference in here to contamination problem. That happened and this was henry of cells can actually. Turns out to float on dust particles and on unwashed hands and they cause quite a bit of damage by contaminating a lot of other cultures.
In labs. So that's what that's about. Sort of the whole of this. The book goes i mean there's a side. And here. Ok so. Christophe walked toward us. Through the lobby of his building. Smiling. Hand outstretched. He was in his mid thirty's. With perfectly worn denim jeans. A blue plaid shirt. And shaggy light brown hair. He shook my hand and debra's then reached for the koreas. But the courier didn't move. Ok. Christophe said looking at debra. It must be really hard for you to come in here into a lab at hopkins after what you've been through. I'm really glad to see you here. He spoke with an austrian accent which made deborah wiggle her eyebrows at me when he turned to press the elevator call button. I thought we'd start in the freezer room so i can show you how we store your mother's cells. Then we can go look at them alive under a microscope. That's wonderful. Never said. As though he just said something entirely ordinary. When the doors opened. We followed kristoff single file. Through a long narrow hall. Its walls and
ceiling vibrating with a deep whirring sound. That grew louder as we walked. That's the ventilation system. Christophe yelled. It sucks all the chemicals and cells outside so we don't have to breathe them in. He threw open the door to his lab with a sweeping to domination and waved his inside. This is where we keep all the cells he yelled over a deafening mechanical hum. That made debra's in the car he is hearing aids squeal. The car his hands shot up and tore his from his ear. Never adjusted the volume on hers. Then walked past christophe into a room filled wall to wall with white freezers. Stacked one on top of the other. Rumbling legacy of washing machines in an industrial laundromat. She shot me a wide eyed terrified look. Christophe pulled the handle of a white floor to ceiling freezer. And it opened with a hit releasing a cloud of steam into the room. Deborah screamed and jumped behind the kharia. Who stood expressionless. Hands in his pockets. Don't worry christophe yelled it's not dangerous it's just cold. They're not minus twenty celsius like you freezes at home. Minus eighty. That's why when i. Open the
smoke comes out. He motioned for deborah to come closer. It's all full of herself. He said. Never loosen your grip on the car an inch forward and till the icy breeze hit her face and she stood staring at thousands of inch tall plastic vials filled with red liquid. Oh god. She guessed. I can't believe all that's my mother. Christophe reached into the freezer. Took out a vial and pointed to the letters h e l. A written on its side. There are millions and millions of her cells in there he said maybe billions. You can keep them here forever. Fifty years. One hundred years even more than you just saw them out and they grow. He wrote the violet healer cells. Back and forth in his hand as he started talking about how careful you have to be when you handle them. We have an extra room just for the cells he said. That's important because if you can tammany. Them with anything you can't really use them anymore. And you don't want healer cells to contaminate other cultures in a lab. That's what happened over there in russia right. Never
said he did a double take and grinned. Yeah he said exactly it's great you know about that. He explained how the he'll a contamination problem happened. Then said herself cause millions of dollars in damage. Seems like a bit of poetic justice doesn't it. Oh my mother was just getting back at scientists for keeping all them secret from the family. Never said. You don't mess with andrea. She'll sit heel on your ass. Everyone laughed. Christophe reach into the freezer behind him. Grab another vial of hilo cells and held it out to deborah. His eyes soft. She stood stunned for a moment staring into his outstretched hand. Then grabbed a vial and began rubbing it fast between her palms. Like she was warming yourself in winter. She's cold. Deborah said cupping her hands and blowing on the vile. Christophe motioned for us to follow him to the incubator where he warm the cells. But deborah didn't move. As a car in christophe walked away. She raised the vial and touched it to her lips. You're famous. She whispered. Just nobody knows it.
I miss. Out there before i take questions i'm going to put one person in this room on the spot and say that christophe a sitting and he can come up and maybe answer some questions. If people have them. That i had to read that scene kids over there. So question. So the question was how did this. Factory begin it. And the answer is that it's not as bad as it sounds. So that he is famous for being the site of the famous just the syphilis studies where. African-american men were. With syphilis were essentially studied to learn. The course of the disease. So they died without being offered treatment. And interestingly this. The healer production factory that started there was in the same time as the test the studies were going on and what's interesting is that they where it was started there because the national foundation for infant child paralysis which is now the march of dimes.
Was in the midst of this big campaign to stop polio and. They had started a big polio center at tuskegee. Because like patients. Had no access to polio care. So they knew that they couldn't stop the polio epidemic. Unless they were able to treat black and white patients. But no one would treat the black patients. So they started this amazing center at tuskegee which was. I mean some of it was one of the most important things that happened for for black patients. During the polio years and. So they had this big polio center. And the reason why they grew they started mass producing heal itself at all was to use them to test polio vaccine. And there's one guy. Child by name. Who was the first african-american. Executive on any. Board. Of any. You know big big. Nonprofit in the in the country. And he was a big civil rights activist and he was on the march of dimes board and he said i want that. The factory at tuskegee. Because it will bring jobs for black scientists it will give a lot of these black students a chance to do this really cutting edge science that nobody was doing. So interestingly. You know
and this is what. Really let the polio vaccine go out to the world so. A group of black scientists in. You know. At this school where people were doing some awful research on black patients. Use a black woman cells. To basically you know. Prove that the polio vaccine worked so that everybody could get it at a time when you know they couldn't get treatment and. You know the. Yeah the irony of that is. Is pretty strong but it. But the fact that the this healer center was there was actually a good thing. At the time. But yet. Every time i say that it happened it does he everyone goes. Oh. Which actually you know it's inching i gave a talk at the march of dimes. In new york. Just last week and they. They basically they. They said that they have never publicly acknowledged. What a great thing that center was because everyone assumes that. It was bad. And i was like guys just talk about it. Like if you don't talk about it that's what makes people think it's bad. Yes yes and no. So there are some things that they know about the cells. Or they know about her cancer. She had h.p.v.. Which is what caused the cervical cancer and she had multiple strains of it.
So there's some very that you know that. Interacted with her d.n.a. in certain ways she also had the syphilis. Which can weaken your immune system and cause cancer to sort of grow. More strongly but i you know we know the mechanics of how why they keep growing like. You know there are certain and zines that rebuild their chromosomes to make it so they never. Age. Properly. But why her cells. Did that at the time and none other did nobody really knows. There's this is that there's a little element of. Sort of. You know that no one has a totally concrete answer that. You know. The family's answer is that. You know she was chosen for this sort of you know. This was. She was brought back to life as an angel to sort of. You know. This is sort of the lord's work and you science can't explain it so there's there's a lot of that. In the story as well. Know sort of to this day. The question was whether the family got any money and they know that they still haven't. Nothing's happened for the family.
They still can't afford health insurance her. One of her sons. Recently had a quadruple bypass. And one of the last things he remembers. Going under anesthesia. Was his doctors are freaking out about. Like oh my god you're right i like the sun and herself was on point medicine and they did all this incredible stuff and. So much of what we can do today is thanks to her and then he woke up one hundred fifty thousand dollars in debt. So you know that hasn't happened. I as a writer coming along. You know. Especially sort of. You know one in a long line of people who sort of came along essentially. Wanting something from them that i could potentially benefit from that someday this was a big issue for me in writing this book. And so. One of the. What. The thing that i've done i created this. Henrietta lacks foundation. So it's actually just launched a couple weeks ago. And relax foundation dot org. And some of the proceeds of the book are going to this foundation and it's. Supplying assuming all works out. Financially with it. Scholarship funds for any descendants then relax and hopefully some money for health care for her kids.
But you know that's going to require a lot of people donating and so you know i've been encouraging you know scientists have used cells in cars some of the corporations even selling them maybe this is a good time to do something and it's. It hasn't. You know it's just sort of starting to happen now so i won't be at all surprised if. If something does happen in that realm. It's very hard for some. You know scientists and. You know the. Institutions have been doing this for them to just sort of. Write a check to the lacks family and. That is never going to happen. In part because it's. This sense of admitting. Wrong and. You know to this day this is still a very sad. A big issue. You know who has the right to profit off of your cells. Do they have to ask you for it. There's really there's not a lot. The current legislation. You know. A lot of. Putting probably most people in this room have their. Tissues are being used in research. And we don't really see most people don't realize it. And some of that is used for profit so. Someone coming forward and saying here's some money for the lax is would set a precedent that.
Science isn't quite ready yet. Yeah so this is something that i struggle with a lot as i was writing the book. I can't possibly summarize that question and repeat it. So you know that's that's sort of there are a lot of different sort of issues tied up in the in the question i guess the. The first one is. Keep reading and. The story is. Of the family themselves and a lot of the reaction of people has have to it is more about what happened after the tissues were taken to the ways in which the family was used in research really. In a lot of ways it's a story about that and it's a story about the importance of scientists communicating to the general public. Particularly an educated. You know people who don't have any kind of scientific background. So there are a lot more issues. In the in it than just. Someone took issue that asking. People should get money. But that's often the way the story is presented and. Yeah and for me the. The importance of balancing. What i didn't want to come from this book was to be for people to read this and think oh my god to do. Culture research is scary or bad
or something and i don't want people thinking my cells. Because you know they're doing something nefarious with them. And they're getting rich off of them. Because of course we want all of this research to happen. And so that's something yeah i think. And i hope that it that comes across in the story partially by tracing. Both sides of the story very. I mean you get the full story of the scientists. And all the science done with the cells. At the same time. As a family and so i you know at the end. The response of that i'm getting from readers are that they're conflicted. In a sense at the end they feel like something. You know this family got a raw deal. For a lot of different reasons. But that it isn't a straight. You know. It isn't just sort of a straight line drawn say. You know. Therefore this. Should happen. You know. But this whole issue of who should profit off the cells and whether you should use in research i mean you know. You could have like panel. People do have panel discussions about that and. You know. So that view of. You know. People's rights and people needing to be able to have. Have the right to say they do or don't want to choose to be used
in research. The. There's a fear. In science of. That giving people that. Permission will essentially inhibit research. And i think that's a discussion is going to continue for a while. It's interesting there are a lot of cases right now where people are sort of. This is sort of bubbling up to the surface in the public more than just in this book. Several months ago well. About a year ago. Some families in minneapolis. Minneapolis and texas found out that the field blood samples that were taken from their kids. To test for genetic diseases which is done. It's standard and it's actually legal. It's the law that you have to do these tests. Those are often stored and used in research. Parents don't often sort of realize that some groups of these families sued the state of minneapolis. As a statement of state and texas. Saying you're doing research on our kids to choose you didn't ask us. We want you to
stop and. Over the christmas holiday. That the court in texas actually ruled in favor of the families and the state of texas had to destroy five point three million samples taken from kids. And stored for research without their parents. Sort of clear consent. And this is this is sort of a huge moment because historically there's been a lot of other cases where people have sued for some kind of control over their tissues and courts have always ruled in favor of the science side of the debate that. You know patients don't have the right to have that control so. It was in this case was sort of fascinating to me because they. It happened and so nobody really seem to notice. I mean and. And the fact that the verdict was destroy all the. Samples is exactly what scientists. You know and. You know i actually sort of fear with this issue is that the response to this question would be ok therefore we have to just get rid of it all. Because if. And if this happens and that actually you know potentially sets a legal precedent right now another state can say well texas just destroyed all those samples so we should do it too and. This could be a sort of creeping thing that. If nationwide. People just started destroying all the
samples. This could be a huge problem for science. And it's exactly what we. We don't want to have happen and so i think in a lot of ways all of this is sort of a discussion. You know that's going to happen. That says ok maybe on a federal level. Before this starts happens state by state and a lot of things that are important to science start to get destroyed. As a sort of reaction to this news that things are being used in research. We should talk about this and across the board when i talk. You know i've talked to everybody who's still alive basically has been involved in one of these lawsuits. And across the board they say if they just asked us we would've said yes. We would not have cared. So it doesn't come down to them. It does lawsuits often come down to the money. Because they then get angry but it seems to me where we're headed is a place where yeah people want to know that the stuff being used in research they want to be asked for their consent and they'll give it. Because they want to have science we all benefit from it. So. But there is a big. You know there's a lot of. Additive of spears the right word but there's a lot of concern on the side of scientists that this is just going to be an awful thing. And i think it's inevitable. Personally. Just based on what's happening in the courts.
Yeah it totally depends on where you are there are some places where their consent process is really detailed you get almost like a book. Just like. We make we're going to keep your tissues after this and this is what's going to happen with them and we may process them and you won't and you know there's a sort of very detailed what is tissue research i mean it's an incredible amount of information sometimes given to patients and then sometimes it's literally. You can dispose of my tissues any way you see fit. Period. So there's no. There's no standard. Across. Across the board for how it's done. And there are a lot of people. You know there are a lot of discussions about how to. Yes should be standardized as i'm sure the recent sort of. You know lies in the thing in a lot of it depends on what kind of research is right so if someone goes to you it does basically what. What happened with henrietta which was the samples were taken just for research. This was not part of her treatment. They just went and took the samples for research. You couldn't do that today without informed consent. That requires. You know when. If you know if if samples are taken specifically for that. If they're sort of saved as part of you know. A medical treatment
and then they're later you. Anonymize like your identity stripped of them. And they're later used by someone else who didn't have contact with you that. That doesn't fall under a lot of the guidelines that currently govern. Tissue research because it's not considered research research on the human. It's. This embodied sort of. Part of it. So again it's. It's this. You know and i've talked to you know the people at the n.h. you handle these things and they all sort of say yeah. This is totally inconsistent and we're probably i have to deal with this. So he there was this case that was very ill got a lot of press i think this probably we're talking about where a guy found out that his tissues had been patented and were worth quite a bit of money and he sued and he did win. Initially and then. The the the. The university hospital and the scientist who he had sued. Appealed. And it went all the way up to the california supreme court and they eventually ruled against him. Yeah. So the case law says. You don't have any property rights in your tissues. You know and this issue of property rights is tough because this makes it sound like. You know everything this room might have million
dollar cells right it's very rare that any cells are worth anything. You know you could take cells from millions and millions of people maybe find one that produces something that you know. Can be valuable and then there's a. This is why the. The discussion of profits is really hard because then it's well. Ok so what's valuable. Was that the sell this thing they produced or then they extracted it from the cell and they use it in did all this other stuff with it and turned it into a drug you know. Thing that's useful. And how much of that was sell and. So this. The complexity of all that makes it very hard to sort of settle the issue. Which is part of why. There's a lot of discussion about it. And i me actually christoph. Since he actually was someone who's actually explained he sat down and drew pictures of cells for them and really walk them through. This is what a cell is this is what people done with them. And if you have anything you add to this but. You know. Yeah they she at particular deborah absolutely benefited from it. The. The process of just seeing the cells and having a scientists care enough to sit down and talk to them for a while. Changed everything. She was able to really understand more what was going on and she
was less scared of them she was very afraid of the cells. For a long time. So yeah just taking that time to do it was made an enormous difference and yeah i do think a lot of it is just that. Not just sort of thing ok someone has to explain it to them but you're right i mean this whole idea of consent. You know when you're doing a medical procedure like people don't read these things and. So you know. There are a lot of things that go. You know. To to look at when we talk about consent but. Absolutely having someone who is sort of. Trained to talk to people who don't know science to sort of say this is what's happening and. I think you know it would make. Have made a world of difference in their case for sure. Yeah so he's referring to the fact that there's a after henrietta died. Various cousins of her parents came in to take care of the kids and. She was molested by one of them and they were very abusive and it turned into this sort of horrible thing and. Part of it was. There's actually a moment in the book when i first conversation i ever had with deborah. Where i called her up and she was her to. Obviously very afraid to talk to me and she was throwing up little things and. Somebody had murdered somebody in there some
medical records stolen and there are these little snippets of this. Larger story that i had no idea of. And just hearing her fear and all of these things that she sort of threw out there i knew that there was something bigger. To the story and that was really what led me to look into the broader story. But in a lot of ways it was you know it is a story about losing a parent. You know it's a story about a lot of stuff it's about. You know. It's about relationships and race and medicine it's about science it's about journalism in some ways it's got a lot of things in there but. Very much part of it is. You know this is what happens when you lose a parent in the sort of. Aftermath of what that. And so to me that was that was part of the story of henrietta. You know the immortal life of henrietta was very much what happened to her kids it was what. You know what. Herself did in science it was all of these things are related to the death of this one woman. And so it just. I felt like i couldn't leave it out. And they're also related to why deborah didn't feel comfortable asking. You know. Older male scientists who came to your house. Anything that was a remotely challenging question. I mean in her house that was something you got beaten for.
So that was also part of the story. To me. Part of that is. You know the. The amount of time that his kid i mean there. I wouldn't be surprised if somebody did at some point try to contact family for something like this. But you know there's this sort of idea of statute of limitations. You know. Which they've heard repeatedly from lawyers. I don't know that it would hold. You know. I'm not a lawyer. You know. But the one thing that i've heard from a few lawyers have approached me and. There were some politics or policy experts in the area of tissue research who said to me ok so there's a federal law that says you can't be. You know if you're being used in research and you want it to stop. You. You can. You have the right to say that all patients have the right to withdraw from research. So someone. A couple people made the case to me that the family could argue that using heal itself in research. Is the equivalent of using them in research because their d.n.a. isn't there. To be a very. It's a. It would be a complicated scientific argument to make. But so there. Some people have said you know ok the family should say that they want all he'll research to stop until someone pays them and the family's response to that is are you crazy. They would never do that.
So part of it is the family i mean. They want someone to acknowledge the things that they've been through and they you know. They want some health care they. You know they want some help in some way but. They have no interest in. Serves her harming science they don't they don't. You know they actually think that that's you know. I don't know that they actually have a desire to sue anyone anymore. They definitely did. You know but i think now they've come to understand that the story's much more complicated than that and. You know they're so proud of her and. What she herself did for science and. They say again they've said many times if scientists asked as if this is ok. We would have absolutely said yes and we would have thought this was all great. But you know. Then. Also the other things that happened to them wouldn't probably happen and. So. So yeah. I don't. Again there's no is there there's no laws being broken and. You know it's perfectly especially particularly when you talk about taking cell. You know the stuff in the fifty's there was this was before we even had.
You know informed consent people were doing all kinds of research on people. You know some stuff that was pretty harsh you know like injecting people with plutonium without their knowledge and. You know this was not illegal and. Right so you know just but and you know just going to the courts i mean in some ways this is why. In this sort of goes back to your question this is the concern that essentially science. Scientists have is that the response to finding out you know how tissues are being used research. Is turn to the courts. To somebody. You know. Which is you know i think the lax is at a point where they realize that that's not exactly the best sort of option. That it's more about. Ok how do we just make sure that what happened as doesn't happen to somebody else. So but i won't be surprised if some lawyers try to contact them at some point. Yeah i don't know what they'll do. But you know as i said imagine the sort of precedent setting thing there's a lot of concern among scientists about. About doing that and the message that it would send other people to be like well your cells might be really valuable to maybe you should hold out and not let people. You know so there. There's. There's this greater.
Sort of concern that the lectures are sort of tied up in a lot of ways they aren't. They shouldn't necessarily be part of that debate over who profits. Issues because this whole other stuff. Like all these other things happen to them so. In a lot of ways their. Their case is just very unusual but it's so far as i'm in seen that way. Mostly that her identity was released so. You know at this point. I mean that was the first big sort of real ethical breach in the sense in the story that. You know today when did you do. You know taken and used in research there stripped of their identities and. That for a while hers. They're called he listens which stands for. Henrietta and lacks and so that was you know her name wasn't initially released. And for a while they were known by a pseudonym. Helen lane. But then her. Her identity was released and her name was associated with the cells. And that changed. I mean that's what sets aside. In a lot of ways this story from all the tissues and various banks and very things because then you have a person and you have d.n.a. connected to a person and her ancestors
and. You know her. Her children and. So that was one of the first sort of points. And then there were a lot of other things that happened after that. You know. Her medical records being given to a journalist to publish them i mean those that shouldn't. Probably have happened but so. But yeah i mean in terms of that moment when the cells were taken in ground. That was not something that was. That was absolutely out of the day wasn't it was a big ethical breach at the time. Of course the way. What has the fact that they went back to the family. That's a whole that takes it into another realm ethically speaking i mean today. You know if a scientist sort of said oh i've got this cell line and i'm going to go find this person's family and. Do research on them and i mean they publish their. Sort of jeanette. It was a very sort of primitive. Genetic map but they published some of the family's genetic. Sort of. Details in science magazine. Where the biggest science. Publications together with their names. So there were just a lot of places where. Privacy really just. The privacy laws just sort of passed over this particular family. And that's really i think. Where the heart of it. You know in a lot of ways the story was. For the family they were it was like they were stuck in
a sort of skipping record. So there was this jerk you know journalists come to them every few years or until a story about this woman who sells or taking that information they went on and people owe them money you know or her money or something and. It was just the same story told over and over and over and over again. And yes so now this is like. I don't like explain the whole thing is much bigger and. But i think the family sort of realized. You know this was going to go on for ever and. The there's so much misinformation out there. And the story that was being told was leaving out the most important part for the family which was what happened to them. And that's really what puts it into the ethical context. Because you know. The way that the story of the healer cells themselves has been held up. Historically speaking is like. Evil white researcher. Stole these valuable cells from this black woman. Knowing that they were going to be valuable. Sold them made millions of dollars. And it was money to the family. Which is not the story at all and. So. And you know and so there's sort of an element of setting the record straight and. But yeah so it's it goes on and now of course there'll probably be.
Yeah. Movies. Yeah gotta play it. But you know the families into it it's interesting their sponsor the book. Particularly the the younger generation of black says so now henrietta granddaughters. She's got grant well grant funding granddaughters for her granddaughters are the ones that are most sort of invested in this they're in their thirty's and. They've grown up knowing that. Like their grandmother did something and something bad happened their parents related to it but nobody talked about that so it was sort of another generation of people not understanding what was going on and and. So there you know. I think there's this sense of like ok we finally understand the life family too. So they're running with it they're like they're really into it they're like signing autographs and then there's this like. Finally we get it you know and they're really proud of what henrietta did for science and and. The grandchildren tell. Child. Generation is. They're really great about that when they talk about this because they say things like you can apply the ethical standards of today to the fifty's and. This is not a story about. You know racism and so they they. This in a really different context and now i think. So as i was
doing the research for this i mean anything that i learned she i'd say. Tell her as it as it was going so she heard all the stories in the book. You know. Before i actually wrote it. So yes as she got to know her mother and her sister and. Like the various stories and i think the science and. So yeah she found closure with this before. Really the book was never even written. In some ways she went through a big sort of transition. With her thinking about the self. So yes. Yes so they were taking cells from. Women of all anybody. Basically any woman who walked into there. Was terrible cancer. So there were white women there were black women there and. You know herself growing the way they did. Had nothing to do with her race there's really. In that sense is very separate. You know. There's also that there's. You kind of can't take race out of the equation completely. You know she was in the public wards at hopkins. Because she was black and she didn't get treated anywhere else and because she was poor and she couldn't afford it. So yes it would have happened to any
woman of any color. If she had been you know. If she had come into hopkins and most of those women were black or. Poor or both. So it's. You know it's in there but. It was also happening you know this is happening in hospitals all over the world and. You know it's very very you know. Regardless of sort of education level and. So it really was something that people were doing. Across the board and in fact george guy didn't know that she was black for quite a long long time after the cells grew. So he just sort of got these cells. There was this like this is. You know. Oh another dish itself and surgeries we didn't know the difference between them and any of the others until they started growing. And this was an era when. You know this. If we didn't talk about consent this was just not. You know and this is this is a time when if you had cancer and you went to the doctor. They might not even tell you had cancer. You know you they just raised you because that was the way. You know that. And patients were fine with that this is like you know doctors and doctor knows best and. You know this is not you know today. And the internet we come in really intensely informed and what are you going to do
in a completely different era in that sense so you know it's not like they were sitting down the rich patients and telling them what was going on at all. Yeah yeah yeah. So i'm putting the. Some of some of the proceeds of the book are going in there. So that's sort of my. Thing that i'm doing. And yeah there's a website on the website there's a donate button. Anyone can donate to the foundation there if you would like to give me a check made out to the energy like cent foundation i will accept that. There. Yes so. It's anybody can donate to it and us about movie rights i mean this is something i'm actually in the midst of we're talking about now. You know there's there's movie interest and. From various directions and that's the one place where. You know i mean. To make a movie. You need to sort of buy someone's life rights or sort of buy the right to do. To make a movie a family and so. One of the things that i have said to. You know sort of anyone who's interested in doing movies like. You know. This is. You want the movie you got to buy it from them basically. So i'm just sort of taking myself largely out of the equation. So whatever i get from that will go to the foundation and then the rest of it will go to
them. So yeah. But actually anyone can donate. Anytime. Thank you for coming.
Collection
Harvard Book Store
Series
WGBH Forum Network
Program
Rebecca Skloot: The Immortal Life of Henrietta Lacks
Contributing Organization
WGBH (Boston, Massachusetts)
AAPB ID
cpb-aacip/15-057cr5nd2x
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Description
Description
Science journalist Rebecca Skloot discusses her first book, The Immortal Life of Henrietta Lacks.Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells--taken without her knowledge--became one of the most important tools in medicine. The first "immortal" human cells grown in culture, they are still alive today, though she has been dead for more than sixty years. If you could pile all HeLa cells ever grown onto a scale, they would weigh more than fifty million metric tons--as much as a hundred Empire State Buildings. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the effects of the atom bomb; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions.Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave.Henrietta's family did not learn of her "immortality" until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot shows, the story of the Lacks family--past and present--is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of.
Date
2010-02-10
Topics
Social Issues
Science
Subjects
Science & Nature
Media type
Moving Image
Duration
00:53:16
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Credits
Distributor: WGBH
Speaker2: Skloot, Rebecca
AAPB Contributor Holdings
WGBH
Identifier: 6394c9c9718eab6227a342ab227a610ec3bcb73d (ArtesiaDAM UOI_ID)
Format: video/quicktime
Duration: 00:00:00
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Citations
Chicago: “Harvard Book Store; WGBH Forum Network; Rebecca Skloot: The Immortal Life of Henrietta Lacks,” 2010-02-10, WGBH, American Archive of Public Broadcasting (GBH and the Library of Congress), Boston, MA and Washington, DC, accessed March 28, 2024, http://americanarchive.org/catalog/cpb-aacip-15-057cr5nd2x.
MLA: “Harvard Book Store; WGBH Forum Network; Rebecca Skloot: The Immortal Life of Henrietta Lacks.” 2010-02-10. WGBH, American Archive of Public Broadcasting (GBH and the Library of Congress), Boston, MA and Washington, DC. Web. March 28, 2024. <http://americanarchive.org/catalog/cpb-aacip-15-057cr5nd2x>.
APA: Harvard Book Store; WGBH Forum Network; Rebecca Skloot: The Immortal Life of Henrietta Lacks. Boston, MA: WGBH, American Archive of Public Broadcasting (GBH and the Library of Congress), Boston, MA and Washington, DC. Retrieved from http://americanarchive.org/catalog/cpb-aacip-15-057cr5nd2x