Harvard Book Store; WGBH Forum Network; Rebecca Skloot: The Immortal Life of Henrietta Lacks

So tonight I am pleased to welcome Rebecca Skloot. She is with us tonight to speak on her book The Immortal Life of Henrietta Lacks. Often we forget that behind our daily medicine treatments and lifesaving procedures there are human stories and struggles mysql details two very different worlds that of a scientific community and of Mrs. lacs immediate family to reveal the staggering effects of 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. Kircus 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 adeptly navigates the wrenching lack family recollections and the sobering overarching realities of poverty and pre civil rights racism. The author's style is matched by a methodical scientific rigor and manifest expertise in the field. Misquote his award winning science journalist whose essays and stories have been widely published and anthologized. She is a contributing editor for Popular Science and has worked as a correspondent for

PBS is Nova series as well as for NPR's RADIO LAB. She frequently contributes the New York Times New York Times Magazine and Discover magazine. She currently teaches creative nonfiction in the MFA program at the University of Memphis. So now you please join me in welcoming back. Thank you. THANK YOU 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 they're excited to say hello to. I'm losing my voice. I've been talking nonstop for the last week and interviews and giving talks. So I may have to stop and hack every once in awhile. I'm very sad because they have through 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 want to read a couple sections from it as I go and then we'll do questions which is my

favorite part. So just out of curiosity anyone in this room worked with us cells in their labs. Good very good. I 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 30. I found a tumour 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 29 1951 David lacke 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 overhead 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 10 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 doctor 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 gynaecology clinic a wide open space empty but for rows of long straight back benches that looked like church pews. I got 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 spot in 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 to dry 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 1889 as a charity hospital for the sick and poor and it covered more than a dozen acres where a cemetery an insanely 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 20 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 undressed wrapped herself in a starched white gown and lay down on a wooden exam table waiting for Howard 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 examining her. He flipped through a chart. A quick sketch of her life and a litany of untreated conditions. Sixth or seventh grade 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 occasional drinker well-nourished cooperative. Patient was one of 10 siblings.

One died of car accident one from rheumatic heart. One was poisoned in was with husband since age 14 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 a 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 didn't 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 words 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 pressed hard in stirrups as she stared at the ceiling and sure enough Jones found a 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 clock's face. 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 at the slightest touch. Jones cut a small sample and sent it to the pathology lab down the hall for diagnosis. Then he told Henrietta to go home. Soon after he sat down and dictated notes about Henrietta and her diagnosis her history is interesting in that she had a term delivery here at this hospital September 19th one thousand fifty he said. No note is made in the history at that time or at the six weeks return visit. That there is 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 from 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 sew 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 30 years and it had never worked. Periodically 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 grow an immortal 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 DNA was. So there's 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 began doubling their numbers every 24 hours which was no one had ever seen anything like this before. They would fill the tubes that they were in dishes and their guy's lab assistant would separate them into more dishes they would fill those dishes and she'd separate them and separate them and so only she had like piles of these things.

And pretty soon George Guy said to his some of his 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. I 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 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 30 in 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 they 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 more so most important cancer medications they were used to develop drugs for Parkinson's

Disease and study everything from lactose intolerance to 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 her 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 non profit 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 a very large industry of you know selling cells and tissues and you know patenting genes and all sorts of stuff sort of started with her cells. So in the late 60s early 70s 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. To start sort of study her cells a group of scientists decided to track down her kids. So this is the very early days of gene mapping. And this group of scientist figured that if they could get DNA 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 25 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 a prison cell. He thought they had her in a cell and it also made sense that these

doctors scientists were coming to them at that particular time her daughter their daughter Deborah was 26 years old and she'd always sort of known that she knew her mother died around 30. No one ever talked about Henrietta. She didn't know what her mother died from. And she always just assumed she would die at 30 as well so she lived her whole life in fear of her 30th birthday. And here she was sort of getting close to it in the doctors show up saying it's time to test you. And so it just sort of made perfect sense for 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 calling for a cancer test results and the Hopkins 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 healing cells using the samples. So her family sort of got sucked into this world of research that they didn't understand and the scientists

didn't realize the family didn't understand and it started this saga for the family. And they were it was very emotional for different reasons for the kids. So Deborah the daughter you know she is a very very deeply religious spiritual woman 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 are being shot up to the moon and injected with chemicals and did that hurt her somehow physically years sort of spiritually. 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's cells helped to create. And at the time one of them was living on the streets. I was 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 couldn't 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 our mother and they owe us money. And you know and sort of paid attention. So flash forward another 25 years in the late 90s I came along and 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 some got a hold of her mother's medical records and published them they were sort of a lot of very traumatic things that happened to the family. When I came along it's when I was in my. Late 20s a graduate student thinking I want to write a story with this woman. The cells like these are 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 socially one day and said that I wanted to write about her and they just went yeah right. And 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. So when I came along so no one had told them what a cell 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 essentially started sort of I would share my research materials with her so I would go and learn things about her mother and I would leave voice messages on her voicemail you know saying like 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 trying to

give her information which seemed like what she wanted. So eventually 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 as like will go to scientific laboratories we will go so learn this stuff so the book traces the states really spanned about a hundred year period which I didn't realize until the reviewer pointed that out I was like wow really. Hundred years. So it tells the story of the keyless cells and you can trace a lot of sort of the big landmarks in modern medicine just by looking at research done in her cells tells Henrietta life story and the story of her family 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 you one more section one more scene from the book.

And this comes so one of the first things we did was we went into a laboratory to see the cells for the first time. And so in order to understand this sort of follow the chapter there just a few pieces of information you need so Christoph is a scientist. Christopher our 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's story. 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 there. You know there are there are test tubes in there labs the lab mice There's fruit flies and there's healing and that's just sort of part of the ambience 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 Deborah to do this but eventually I brought her in to Christophe's 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 car is Deborah's younger brother and there's a reference in here to contamination problem that happened and this was Henry's cells can actually turns out to float on dust particles in unwashed hands and they caused quite a bit of damage by contaminating a lot of other cultures in labs so that's what that's about. So of all of that the book goes on I mean there's a saga in here. OK. So Christophe walked toward us through the lobby of his building smiling hand

outstretched. He was in his mid 30s with perfectly worn denim jeans a blue plaid shirt and shaggy light brown hair. He shook my hand and Deborah's then reached for the Koreas. But the courier didn't move. OK Christoph said looking at Deborah 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 Christoff 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 da

motion and waved us inside. This is where we keep all the cells he yelled over deafening mechanical that made the car use hearing aids squeal. So his hand shot up and tore his from his ear. Deborah 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 like a sea 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 hiss releasing a cloud of steam into the room. Deborah screamed and jumped behind Zaccaria who stood expressionless hands in his pockets. Don't worry Christophe yelled it's not dangerous it's just cold. They're not minus 20 Celsius like your freezers at home. They're minus 80. That's why when I open them the smoke comes out. He motioned for Debra to come closer. It's all full of her cells he said. Debra loosened her grip on Zaccaria and inched

forward until the icy breeze hit her face and she stood staring at thousands of inch tall plastic vials filled with red liquid. Oh God. She gasped. I can't believe all that's my mother. Christophe reached into the freezer took out a vial and pointed to the letters H 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. 50 years 100 years even more than you just thought them out and they grow. He brought the vial of healing. 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 contaminate them with anything you can't really use them anymore and you don't want 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 heel or contamination problem happened then said her cells caused

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 the secrets from the family. Deborah said you don't mess with Henrietta. She'll sit on your ass. Everyone laughed. Christophe reached into the freezer behind him grabbed another vial of heal cells and held it out to Deborah. His eyes soft. She stood stunned for a moment staring into his outstretched hand then grabbed the vial and began rubbing it fast between her palms like she was warming herself in winter. She's cold. Deborah said cupping her hands and blowing on to the vial. Christophe motioned for us to follow him to the incubator where he warm the cells. But Debra didn't move. As a Korean Kristoff walked away she raised the vial and touched it to her lips. You're famous she whispered. Just nobody knows it. Stop there. Before I take questions I'm going to put one person in this room on the spot and say that Christopher is sitting right.

Yeah I mean he can come up and maybe answer some questions. People have the that what I had to read that scene over there. So question so the question was how did this factory begin. 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 Tuskegee syphilis studies where African-American men with syphilis were essentially studied to learn the course of the disease. So they died without being offered treatment. And interestingly this the production factory that started there was in the same time as the Tuskegee studies were going on. And what's interesting is that they where it was started there because the National Foundation for infantile 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 black

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 happen 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 healing cells at all was to use them to test a polio vaccine. And there was one guy Charles 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 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 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 used 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. The irony of that is pretty strong but it but the fact that he is healing center was there was actually a good thing at the time. But yet every time I say that it happened it does. Everyone goes oh. Which actually the you know gave a talk at the March of Dimes in New York just last week and they they basically 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 you guys just talk about it like if you don't talk about it that's what makes people think it's bad. Yes and No. So there are some things that they know about the cells or they know about her cancer. She had HPV which is what caused the cervical cancer and she had multiple strains of it. So there are some theories that you know that interacted with her DNA in certain ways she also had said the syphilis which can weaken your immune system and cause cancer to sort of grow

more strongly. But you know we know the mechanics of how why they keep growing like you know there are certain enzymes that rebuild their chromosomes to make it so they never age properly. But. Why her cells did that at the time and none others did. Nobody really knows. There's this is there's a little element of sort of you know that no one has a totally concrete answer for that. You know the family's answer is that you know she was chosen for this you 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 know science can't explain it. There's there's a lot of that in the story as well. You know sort of to this day the question is whether the family got any money and know that they still haven't. Nothing's happened for the family. They still can't afford health insurance her one of her sons just recently had a quadruple bypass and one of the last things he remembers going under in a seizure was his doctors were freaking out about like oh my

god you're like his son and herself was an important 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 things that I've done I created this Henrietta Lacks Foundation. So this actually just launched a couple weeks ago and a lax foundation board and some of the proceeds of the book are going into this foundation and it's displaying assuming all works out financially with this scholarship fund for any descendents of Henrietta Lacks 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 scientists of using cells and some of the corporations have been 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's 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 big issue. You know who has the right to profit off of yourselves. Do they have to ask you for it. There's really there's no there. The current legislation you know a lot of pretty 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 first one is keep reading and the story is of the family themselves and a lot of the reaction that people has have to it is more about what happened after the tissues were taken to the ways in which the family was using 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 it than just someone took tissues without asking. People should get money but that's often the way the story is presented and. And for me 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 tissue culture research is scary or bad or something and I don't want people taking 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 something yeah I think and I hope that it 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 the family and so I you know at the end the responses I've been 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 you can draw and 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 the right to say they do or don't want their tissues 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 to realize that. So if some groups of these families sued the state of Minneapolis or the state mails the state of Missouri and Texas saying you're doing research on our kids tissues 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 5.3 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 sort of 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 nobody really seemed to notice. I mean and and the fact that the verdict was destroyed 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 do. 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 to happen 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 who's been involved in one of these lawsuits and across the board they say if they had just asked us we would have said yes we would not have cared. So it doesn't come down to them. The 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 yet people want to know that this stuff is 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 appears 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 it. 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 profit out 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's there are a lot of discussions about how to should we standardize this and so the recent sort of you know lies in the thing and a lot of it depends on what kind of research is right so if someone goes to you and does basically with what happened with Henrietta which was these 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 if you know if the if samples are taken specifically for that. If they're sort of saved as part of you know medical treatment and then their later you anonymize like your identity is 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 on a 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 people at the NIH who handle these things and they all sort of say yeah this is totally inconsistent and we're probably going to have to. Deal with this. So he there was this case that was very odd got a lot of press I think this probably 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 university hospital and the scientist 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 everybody in 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 of millions of people maybe find one that produces something that you know can be valuable and then there's this is why the the discussion

of profits is really hard because then it's well OK so what's valuable is was it to sell this thing they produced more than they extracted it from the cell and they used it did all of this other stuff with it and turned it into a drug you know thing that's useful and how much of that was the cell 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 actually Chris stuff since he actually was someone who 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 that yeah she had a particular Deborah absolutely benefited from it. The process of just seeing the cells and having a scientist 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 saying 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 have made a world of difference in their case for sure. Yes so he's referring to the fact that there's a after hundred 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 was actually a moment in the book when the first conversation I ever had with Deborah when I called her up and she was obviously very afraid to talk to me and she was throwing out little things. Somebody had murdered somebody and there were some medical records stolen and there were 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 of 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 her cells 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 you 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 her house anything that was remotely challenging question. I mean in her house that was something you got beaten for. So you know it was all sort of part of the story to me. Part of it is this you know the time that has. I mean there are I wouldn't be surprised if somebody did at some point trying to contact the 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 sort of 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 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 heel cells in research is the equivalent of using them in research because their DNA is in there to be very. It's a it would be a complicated scientific argument to make but 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. We 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 sort of

harming science they don't you know they're 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 is 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 have asked us that this was 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 so. So yeah I don't know. Again there's no there is there is no law is being broken and you know it's perfectly especially particularly when you talk about taking cell. You know this stuff in the 50s 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 leading injecting people with plutonium without their knowledge and you know this was not illegal. And right so

you know just but and you know but just going to the courts I mean in some ways this is why this sort of goes back to your question this is the concern that essentially scientists scientists have is that the response to finding out you know tissues are being used in 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 to us 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 yourselves might be really valuable too maybe you should hold out and not let people you know so there's there's this greater sort of concern that the axes are sort of tied up in a lot of ways they they aren't they shouldn't necessarily be part of that debate over who profits of tissues because this whole other stuff like all these other things happen to them so in a lot of ways they're their case is just very unusual.

But it's so far haven't been 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 a sense and a story that you know today went to you know taken and used in research there stripped of their identities and that for a while her as they're called he lists which stands for Henrietta and lax 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 that are in various banks and various things because then you have a person and you have DNA 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 that

was not something that was that was absolutely out of the day and wasn't sort of a big ethical breach at the time of course the way what happened 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 and I'm going to go find this person's family and do research on them and I mean they published 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 they 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. The story was for the family they were it was like they were stuck in a sort of skipping record. So there was this you know journals would come to them every few years and tell a story about this woman whose cells were taken with their permission and they went on and people owe the money you know 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 really 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 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 healing 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 owes 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. But yeah so it's it goes on and now of course there probably be yeah. Movies again I guess. But you know the families into it it's interesting their sponsor the book particularly the younger generation of blacks. So now here it is granddaughters. She's got grandsons and granddaughters but her granddaughters are the ones that are most sort of invested in this they're in their 30s 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 so there you know I think there's this sense of like OK we finally understand and like family too. So they're running with it they're like they're really into it they're like signing autographs and they're just like finally we get it you know they're really proud of what Henry did for science and the grandchild child generation is really great about the when they talk about this because they say things like you can apply the ethical standards of today to the 50s and this is not a story about you know racism and so they they they see 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 tell her as it as it was going so she heard all the stories in the book before I actually wrote it. So yes as she got to know her mother and her sister and the various stories and the science and so yeah she found closure with this before really the book was ever

even written. In some ways she went through a big sort of transition with her thinking about the cells. Yes so they were taking cells from women of all anybody basically any woman who walked into there with cervical 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 was happening in hospitals all over the world and you know 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 got the cells and it was just like this is you know oh another dishes cells from the surgery suite he 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 they didn't talk about consent this was just not you know and this was at 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 treated 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 was not you know today with the Internet we come in we're like 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 part yeah yeah. So I'm putting 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 a web 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 enery like scent foundation I will accept it there. Yes so anybody can donate to

it. And us about movie rights I mean this is something I'm actually in the midst of sort of talking about now. You know there's there's a movie interests 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 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 that equation. So whatever I get from that will go into the foundation and then the rest of it will go to them. So yeah. But Actually anyone can donate any time. Thank you for coming.