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>> next, author rebecca skloot on her back, the immortal life of henrietta? ms. skloot has been on the board of arizona critics circle and spoke recently at the virginia festival of the book in charlottesville. this is a half-hour. >> rebecca skloot, who is henrietta? >> she was a poor african-american firmer who was raised in southern virginia and eventually moved up to virginia for she was diagnosed with cervical cancer. and without her knowledge her doctor put a small piece of her tumor and put in a petri dish

and herself became the first immortal cell line and culture. sanka seven tragical cells for decades and no one knows entirely while, but roosters never die. her cells are still alive today growing in laboratories around the world, though she died in 1951 and they became one of the most important things that happen in medicine. there will how to develop the polio vaccines in one of the space missions. or so for the first conquered urging some of the first match, the scientific and mexican from the solstice go on and on. >> and their subpoenas today? connect behalf. >> what is this outline? >> a cell line is their souls to live in the laboratory and grow indefinitely. so they will keep growing and multiplying and living outside of the body as long as you keep them third and clean in the right temperature and everything. so they'll just live on forever.

>> why did the doctor taker sells? >> so this was a point when scientists were trying to grow any cells they could get their hands on really. and so they been taking samples from anyone who came into the hospital, lots of different hospitals. so if scientists had taken hundreds of samples from people and they'll die. >> with their knowledge or without? >> pretty standard to do without their knowledge. very few people know this is happening. >> this is in the 40's? >> this is in the 50's. 1951 and from the cells were taken. it was standard practice at the time and in some ways still is. a lot of people have their tissues used in research now and don't really realize it. >> and why from a tumor? >> well, there was a specific study going on at hopkins. the pap smear had been developed no one before this and doctors could take the cells from the or look at them under a microscope to diagnose cancer, but they

didn't really know what they were looking for so there was widespread misdiagnosis. and they're sticking cervical cancer to cells specifically so they could establish what they were looking for with the pap smear. so that's why cervical cancer cells more specifically, but were generally to return to grow into cancer cells that could because, you know, at this point they didn't know anything about cancer. they didn't even know it dna was. they had no idea how cancer cells behave differently than normal cells and how they spread so fast. and part of it was that they wanted to grow cancer cells so they could figure what cancer really was. >> what's the medicinal value than of cancer cells? >> yeah, i often get this question. how did cancer cells get the polio vaccine? it seems like a complete disconnect. one of the ways is that they do have a lot of things about them that are normal. they have abnormal dna, but they still metabolize and they produce proteins, energy and they have cell membranes that

function like normal cells. so you can study what normal out of the cancer cell and apply that to any cell. they also work as little factories. so if you infect you a cells with the virex, like polio, the cells grow and grow in the virus will reproduce in the south and you can mass-produced by resave. and extract them from the cells. so they were little factories. but just more generally, and they're just really widely studied. so there's a good baseline for any research. scientists know how he was cells behave and they know what to expect from them in a dish. so if you expose them to a drug or something else in the cells react, they know what they're starting from so they can see how it changes. so there are a lot of different reasons. >> what are the theories for the reasons that her cells survived? >> there really aren't any. we know that she had hpv, which is the virus that causes

cervical cancer and that that hpv sorted inserts itself into your dna and change that and that's what causes cancer. so there was something about the hpv and how it interacted with herself that caused the cancer itself to be very breland. she was 30 years old and had a nickel sized tumor when they found it. [inaudible] nike which, but more sort of amazing thing is the one from a nickel size within six months every organ in her body had been taken over by cancer so it grew very fast. more than her doctorate ever seen before. so there was something special about her tumor. we know that there's there is an enzyme in the cells that rebuilds the chromosomes so they don't age. they just sort of stay young and never die. but why yourself do that another student is still a little bit of a mystery. >> tell us about her family. tell us about her background first of all. is that she's a tobacco farmer, but a little bit more

information. >> she came from -- she worked the same farmland that her ancestors had farmed displays are very very impoverished very impoverished family for many generations. and she lived up to baltimore in the 40's because their tobacco farms had dried up and are has been found work in baltimore, so that's how she ended up that afghans. and, you know, she had five kids by the time she died at 30 and she was just this caretaker. she wanted more children. she was very devoted to her kids. if you are in baltimore and didn't have a place to say that if you're hungry there was always a pot of food on the stove and she would feed you. if you needed a girlfriend, she was 91. she was the sort of super mod to everyone. so to her family the fact that her cells are really taking care of so many people make up so many people sort of makes sense in terms of her personality and what she would've done. her family would very much see

the cells as henrietta, the reversal is very much alive in the cells. and that she was sort of brought back as an angel to take care of people. and, you know, the family is very conflicted feelings about the cells. >> are all five kids still living? >> no, their three kids alive today. her family didn't know the cells have been taken until the 70's. [inaudible] >> scientists after the cells had grown, they hadn't ever really seen cells like them. to learn more about the cells, the scientists decided to check on her kids and do research on them in order to understand the cells. so her husband, who had a third-grade education, he didn't know what he saw was, got this phone call one day in the way he understood it was we've got your wife, she's alive in the 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've cancer. none of which the scientists said, but, you know, he thought

they had her in a cell. that was his only understanding of the word so. so her family got stuck into this research that they didn't understand and the scientists didn't realize the family didn't understand and it had some pretty dramatic effects on the family. they sort of thousands struggling with a better sense for a lot of different reasons. some of them just for emotional. her daughter, deborah, very much believes her daughter is alive in those cells and what of the scientists questions like if you're sending herself up into space, can she rest in peace? and when you reject them at these chemicals do that somehow hurt her? and henrietta's son sons found out fairly early on that henrietta cells were also the first ever commercialized. so they were bodkin sold multi-billion-dollar industries crowd of selling pixels. and her family can't afford health insurance. they're quite poor and they often say, if our mother was so important to medicine, why can't we go to the doc or?

so they've never gotten an answer to that question. >> has there been ever any litigation? >> no, not for the family. there have been other -- is the method was access to legal counsel that they could never have that. but also there've been other cases in the past where people have sued over ownership of their cells, a man who found out his doctor had patented his cells without his knowledge and they were worth billions of dollars. it's a very wrote that that happens. most cells are worth nothing. and the courts have always ruled against the people of the cells come from. so the way that the caselaw stands as he don't have property rights in your tissues want to leave your body. >> what's the -- that's how the courts have ruled? what about johns hopkins doctor who took these? who was that? tell us about that. >> well, there were a lot of them. there is a sort of team of doctors. howard jones was your initial doctor saw the tumor and

diagnosed it. and there was this team at hopkins who's doing this richard on the cervical cancer. you know, in the scientists agree the cells were different from a doctor so they took the cells and given to the scientists. and he gave them all away for free. no one ever patented the cells. that wasn't something he did in the 50's. so you just give them to anyone who he thought would use them for science and they very quickly went all over the world. at one point, a factor was set up where they were mass-produced to the tune about read trillion cells a week or so the volume of the cells produced is just kind of incomprehensible. >> when you produce these, besides polio, wealth of the cells comes? >> everywhere. >> other examples. >> well, you can use them as a baseline. so you can grow, as i said, they can grow various things in them so if you want to grow certain protein, you can use the cells for that. and they are, you know, the

research tenderly as if you go to some scientific databases and you type in shiva, it's like going on google and taking and. and the flood of research out there that was done in her cells that still goes today. >> what is he left? >> it stands for henrietta lacks. i can't remember the exact numbers published each month using keyless cells is about a chairman with a number exactly as about 3000 papers a month. so it's just an enormous amount of research. >> how did you find this story? >> i first learned about the cells when i was 16 and the basic i/o to class. and most people, you do, and -- >> after the 70's it became more public knowledge? >> most people don't know her name come anything about her, but they're the cells.

so scientists are biology teachers will talk about cancer and cells in the paper learned a lot of what we know about cancer and cells from this one cell line. the cells have been growing since 1951 and there's a sort of sci-fi element to it. they can say they've been alive longer than the person they came from. >> to did intrigue you at age 16? >> part of it was my teacher knew her name for some reason. he wrote it in big letters on the board and he said the cells came from henrietta lacks and she was black and i was there. any race aboard an class is over and and i went up to him afterwards and said what else we know about tyranny was she? and she said that there. we don't know anything else. and it just stuck. and as i got older and started getting interested in writing. so i've been living with the cells since the 80's. >> are you the first person to pursue this as a book? >> is one book that came out in bed -- he was in the late 80's called a of cells and that was about a specific moment in the

cell history. so was the cells had ability to contaminate other cultures so they grow so powerfully and cells can float on dust particles on travel and unwashed hands. hands. so could touch a dish of cells and touch something else you can transfer the cells. and withoutkbaa)h's's$s"d)p+d$s$

>> and then i decided to study writing so into this mfa programs and part of what you do in the stroke rinses you have to read it be safe and as a publishable book length manuscript and you have to produce it by the end of your school. and so, literally the program started and we started our first classes and they said okay, you now have to come up with a book idea, which is inconceivable to students. i mean, i teach in an mfa program and that freaks everyone out. and you can't do really book in three years. all coming up at the idea, writing at the sort of impossible task. and so i like many students said while already collection of essays, because that sort of easier to conceive of anyone entire book. and i knew it had to be 150 pages and so i thought i was going to write a book, a collection of essays about forgot women in science. and i did a little, you know, proposal and i were at the top of the page, forgotten women in science and a numbered one through 12 because then you page count it was like 10 pages per woman and i wrote henrietta

lacks on the first line and that was like a wonder the 11 people will be. and so i said to start trying to henrietta fagin thing of the orrico spirit and inhering and 11 years later. just publish the book. so there was a moment -- >> you still got your mfa and didn't publish? >> i did on my coursework and left without finishing my thesis in a bar and said you're crazy, don't do that. is that i'm going to go to the book the way i feel like i have to do it and then i'll hand them the book in get my degree. so i finished my courses and 99, 2000 my diploma exist 2008, maybe 2007. so yeah did eventually go back and do it. >> when did she meet her family? where did you find them? >> i met them -- i guess it was actually january 1 of 2001 minute any of them in person.

>> was that exciting? >> yeah, it was sort of terrifying and i've been trying for a very long time to get them to talk to me and they were very resistant. it took me about a year and a half -- >> with a suspicious? >> i was one in a long line of people is coming to them particularly white people and they just didn't trust anybody. you know, they have had so many bad experiences. henrietta's medical records were released to a journalist and published at one point in that book, conspiracy of cells, and trend. at one point someone came to them and said he was a lawyer and was going to sue on their behalf and then ended up trying to steal the mother's medical records. there were so many things that happened to them they didn't know who to trust and didn't believe anyone no matter what they said they were trying to do. so, you know, the very understandably were weary of me. and so it took a long time to sort of get them to dr. mansour to open a tiered >> and what did you learn from

that? >> a lot. i think i'll probably figure out what i learned from them for years. you know, i was in my late twenties at that point and i didn't really know what i was doing. >> probably safer. >> a lot of people say why did you keep going? several these roadblocks and i just wanted to do this thing and i thought it was sort of this site is that i was young and experience and was like no i'm just going to do this thing. i didn't understand how impossible the task was when i set out to do it. and so i think i learned so much. but i think one of the things i learned very early on was the importance of thinking about the impact that journalists have on people that they write about because a lot of their mistrust towards me was the ways in which they had sort of had that experiences in the past and writers have come and gone and

had different effects on them. and so, i spent a lot of time thinking about that as i was trying to win their trust and thinking about what my duty was as a writer, sort of ethically speaking at one of the first things that i really thought a lot about was his idea of being another person who came along and was going to benefit from this in ways that they might not. and i wanted from the beginning i felt like it was important for them -- for this to be something that could benefit them if it there was going to also benefit me. so i said from the beginning is going to set up a foundation, which i did. i sent up this henrietta lacks which is a scholarship on for descendents of henrietta lacks. some of the proceeds gone going and they hopefully will be able to get some scholarship money for school and hopefully some of her children to help them with health care. so that all came out of this sort of timeout seeing how

traumatized they were an understanding that i was coming to them is another person who is part of that story and wanting to approach it in a way that wasn't going to be damaging for them. >> did johns hopkins willingly work with you on this boat? >> yeah, they never try to hide anything. i had access to all the archives they are. and for them, this story has been out there and small versions for a long time, little newspaper articles, magazine stories have been published with just a nugget of the story. one in cells taken without permission. became big thing in science. i think in some source they were relieved so they could stop answering his questions over and over again from journalists and, did you take these cells without permission. but i think there was not an understanding of the whole scope of the story the way the children were used in research and so i think they are coming you know, a lot of people were

learning -- have been learning from the book about the range of things that actually happen. >> rebecca skloot, did you talk to ancestors were to the doctrines of the type of cells? >> all of the above. >> is he still alive? >> yeah, her initial doctors 99 now. his name is howard jones and he is an incredibly important scientist, physician historically. he was behind the first test tube baby in the united states. he and his wife were some real pioneers in vitro fertilization and infertility research. so he was still alive and he remembered her case very vividly because it was unlike anything he'd ever seen. so i talked to him and also yes i spent a lot of time with henrietta's siblings and cousins who she grew up with a siblings. her husband was still alive. so a lot of extended dimly i spent time with. >> was there anything nefarious about taking -- the taking of

the cells in 1951? >> no, there wasn't. i mean, this is something of a standard practice. there was absolutely no intention. there was nothing done to her. you know, they took the sample without asking. they could've never imagined what that could have led to. you know, we didn't know what dna was so we didn't know someday someone will be able to look into those cells and went about her kids or grandkids or her creaky and kids. they no concept of the things with any money. none of that was even a remote possibility at that point. for them this was just about trying to grow cancer cells to cure cancer and there was no intention at all. >> they started selling those cells was there any discussion at johns hopkins about financial support for the family? >> now, and hopkins never sold them. they gave them away for free and they're sort of public domain. you could sell them if you wanted to. and mean, there's no pattern.

they're just out there and anyone can grow them. and a scientist can grow them. >> had john hawkins patch didn't do what a few different story? >> absolutely, they would have profited from them. but in the 1950's you can pop them. people didn't start passing cell lines and things until much later. so that's one of the sort of tough questions about the money issue is who -- people often not so has the family been given any money and the answer is no for a lot of reasons. one of which is it's impossible to really treat to me the money, how much money was made, how much of the money -- you can go online and some of our biggest biotech companies started off at this one company sterling said to herself. you can buy a file of hela cells and the products made using none anywhere after about $10,000 a vaio. but how much of that is the hela, how much is the science,

people -- >> who owns he loved? their biological supply companies. >> so a lot of companies sell them? >> and there's nonprofitable banks to provide them and them just as to keeping cells alive and going for science. yeah, anyone can fill them. and, you know, so that the questions, i have a tissues on file somewhere, a lot of them being used in research. , then turned into commercial products in some way. so the question is to the lack is a big one because if you give money to the rebecca skloot, what about the lives way of the others being used in research and where does that money come around part of this larger discussion that is happening about who should be profiting parts of the human body and who

should have control over that? in a a lot of ways is becoming part of the health care debate because so much of our future edison drugs and testing and everything else starts with research on human cells that are taken from people, ought to do without them really realizing it and then commercialized. they are taken from people, turning to cement to the before them. so it's becoming part of the health care debate about who should have access. >> how do hela cells different stem cells for >> hela cells or cancer cells and stem cells aren't. they can grow into other kinds of cells and hela cells are cervical cancer cells so they're a specific kind of cell. that you can now science ways you can alter hela cells turn

them into other cells which is asserted that is sort of amazing. so scientists have the ability to take a hela so he is like a hard sell or something else. so in some ways they have -- they have behaviors that sound like themselves but they can't sort of become something else themselves. and also there just, cells or if they have extremely abnormal dna and a half -- so a lot about them is -- >> where do the kids live and what do they do? >> they live in baltimore and they are mostly unemployed. several of them are unemployed. one of her sons drives a truck. he was laid off from the bethlehem steel there a while ago. so he's -- he does short and occasionally long-haul trucking up and down the east coast. and they're in their 60's and 70's. >> du jour book, "the mmortal life of henrietta lacks" bring them media attention or have

they avoided the limelight? >> there is the immediate interests, but it sort of picking and choosing what they do. they were yeah pics six, away with their article or an speak for themselves and that people hear them. one of the things that's been happening with the story is that, you know, i worked on this for over a decade and there was quite a while where they were like yeah right, you're never going to finish this book. and then when i did finish it, there was the sense among her kids and nobody was going to read it and nobody was going to care because that's been their experience for all their lives. and so for them, you know, the media coverage and, you know, they come to a lot of my book events book events as i've been on the october and the responses are really amazing for them as if is dating. and for her children, the story

of how much been about what to get recognition for another her mother and what happened to her in the offing in a lot of ways i think they haven't really thought that much about the story in terms of the cells and what they experience. and in a lot of ways the book is about them and the research on them and the fact they went through something in some ways much more traumatizing than what happened to their. and i think one of the things that has happened is they're now able to own their story a bit more because people are coming to them and saying i'm sorry for what she went through an thank d thank you foremothers contribution to science and math meant the world to them. >> today with a doctor even think about taking cells without telling the patient or getting permission or do they still do that? >> it depends on how the cells are taken. so what happened to the family in the 70's, a researcher going to a person specifically for tissues for research couldn't happen. today there's a federal law that says if you go to prison just to take tissu f