>> who was henrietta lacks? >> pour tobacco four raised in virginia and moved to baltimore where she was diagnosed with cervical cancer and 30 and without her knowledge her doctor took a small piece of her tumor and put it in a petri dish and the cells became the first immortal cells in culture. scientists had been trying to grow cells for decades and it never worked. no one knows entirely white hearse never died. her cells are still alive today growing in laboratories around a while ago she died in 1951. and they became one of the most important things that happened in medicine and they were used to help the polio vaccine. they went up in the first space mission to see what would happen at schuman's be 18 in zero gravity. her jeans were the first map. the scientific maps that can go on and on. >> and they are still used today? >> still one of the widely used.

yes. >> and what is a cell line? >> the hour cells that live in the laboratory and grow indefinitely, so basically they will keep growing and multiplying and living outside of the body as long as you keep them safe and clean and the right temperature and everything so they will live on forever. >> why did the doctor take her cells? >> this was a point when scientists were trying to grow any cells they could get their hands on the release of the been taking samples from anyone who came into the hospital. lots of different hospitals. scientists had taken hundreds of samples from people and they all died, their samples all died. >> with their knowledge or without? >> pretty standard to do it without their knowledge, yes, so very few people knew this was happening. >> this was in the 30's, 40's? >> the 50's, 1951 is when the cells were taken. it was standard practice of the time and in some ways is to take a lot of people have their

tissue used in research now and don't realize it. .. >> they had now idea how cancer cells spread so fast. so they wanted to grow cancer sells to figure out what cancer really was. >> the value of cancer cells.

>> how did cancer cells play into the vaccine. seems like a complete disconnect. one of them is that they do have a lot of things about them that are normal. they have abnormal dna, but they still metabolize and produce energy and have some membranes that function like normal sells. so you can study a normal cancer cell and apply that to any cell. and they work as little factories. so if you infect cells with a virus, like polio, the cells grow and grow and grow and the virus reproduces, and you can mass produce viruses and extract them from the cells. so there were factories. they're just really widely studied. so, there's a baseline for any research. scientists now how they behave and know what to expect from them in a dish, and expose them to a drug or something else, and

the cells react, they know how it changes. >> what are the theories for the reasons that her cells survived? >> there aren't any. we know that she had hpd, which is the rye obvious that causes cervical cancer, and it inserts itself into your dna and changes it and that's how it causes cancer. so something about the hpd and how it interacted with her cells that caused the cancer to be -- she was 30 years old and a nickel-sized tumor when they found it. that's not huge, but the more amazing thing i went from that size within six months every organ in her body was taken of by cancer. so it grew very fast, more than her doctor had seen. so there was something special about her tumor, and there's an enzyme in the cells that rebuild

the chromosomes so they don't age and just stay young. but why her cells do that and others -- it a little bit of a mystery. >> tell us about her family. tell us about her background first. she was to want -- >> she worked the same farmland that her ancestors farmed as slaves. a very impoverished family for many generations. she moved to baltimore in the 40s because the to be -- tobacco farms trade up. that's how she ended up at hopkins. she had five kids by the time she died at 30, and she was a care taker. she wanted more children. she was very devoted to her kids. she was also a person who, if you were in baltimore and didn't have any money and needed a place to stay, you slept on her floor, and there was always a

pot of food on the stove and she would feed you. if you needed a friend, she would be there. she was a super mom. so to her family, the fact that her cells are taking care of so many people, and have helped so many people make sense in terms of her personality and what she would have done. her family very much sees this as henrietta and believe her soul is very much alive in the cells and she came back as an angel to take care of people. the family -- >> are the kids -- >> there's three kids still alive today, and they -- her family didn't know the cells had been taken until the 70s. >> how did they find out? >> after the cells had grown, the scientists -- they hadn't ever seen other cells like them, and to learn more about the cells they decided to track down her kids and do research on them in order to understand the cells. so, her husband, who had a third-grade education -- didn't

know what a cell was -- got this phone call one day, and he in other words it, we have you're wife, she is alive in a laboratory, we have been doing research on her for 25 years, and now we have to test your kids to see if they have cancer, none of which the scientists said. he thought they had her. that was her only understanding of the word cell. so her family got sucked into a world of research they didn't understand, and the scientists didn't know they didn't understand, and it had a traumatic effect on her family, and they have been struggling with it ever since. a lot of of them are emotional. her daughter deborah very much believes her mother is alive in the cells, and she would ask the scientists questions if you're sending her cells to space, is she in peace? and if you inject the cells, does that hurt her? and her sons found out early on

that henrietta cells were the first commercialized. and her family can't afford health insurance. they were quite poor, and they often say, if your mother was so important to medicine, why can't we go to the doctor? so they have never gotten an answer to that question. >> ever any litigation? >> no, not from the family. there have been other -- >> why? >> access to legal counsel. didn't ever have that. also there have 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. very rare that happens. and the courts have always ruled against the people who the cells come from. so the case law is you don't have property rights on your tissues once they leave your

body. >> is that how they -- that's what say say. >> hosha hopkins doctor who took this? who was that? >> guest: there was a lot of them. so there was a team of doctors. howard jones was her initial doctor who saw the tumor and diagnosed it. and there was this team at hopkins who was doing this research on the cervical cancer. and the scientists who grew the cell was different from her doctor. so they took the cells and gave them to the scientists, and he gave them all away for free. no one ever patented the cells. it wasn't something you did no those days. so he gave them to anyone who he thought would use them for science. and they very quickly went all over the world. at one point a factory was set up where they were mass produced to the tune of three trillion cells a week. so the volume of sell cells produced its incomprehensible.

>> host: where else have these cells gone? >> guest: everywhere. you know, you can use them as a baseline so you can grow, as i said, various things, and if you want to grow patriot -- protein, you can use them for that. the research -- if you go so the scientific databases and put in he lashing it's like typing in "and" in google. the flood of research on the cells, and it's still going on today. >> host: who is hela. >> guest: the name of the cells. it's named after her. the scientific journals published each month using hela cells is around 3,000 papers a month. so, there's just -- and none of my research.

>> host: how did you find the cells? >> guest: i learn about the cells when i was 16 in a basic biology class. >> host: after the 70s its became more public knowledge? >> guest: they don't know anything about her or her name, but there's the cells, and biology teachers talk about cancer and cells and say we learned about cells from this one line that has been growing since 1951. this sort of -- they have been alive longer than the person they came from. >> host: did it intrigue you at age 16? >> guest: part of it was my teacher knew her name for some reason. he wrote it in big letters on the board, this where is the cells came from, her name is henrietta lacks and she was black, and i asked him, do we know anything else about her? and he said, we don't know anything else. and it just stuck.

and as i got older and started getting interested in writing. >> host: are you the first person to pursue this as a book? >> guest: there was one book that came out in the early 80s, called "a conspiracy of cells." about a very specific moment in the cell's history. so there's the cells that have the able to contaminate other cultures, so they grow so' u powerfulfully, and they can travel so if you touch a dish of cells and touch something else, you can transfer the cells. so without knowing it the cells had grown out of control and contaminated a lot of things. one person wrote a story just about that, the contamination issue and the controversy is caused. no one wrote about her and her family in the larger scope of the cells, and there's this history and science and a broader look at it. >> host: so, day one, when you

said to yourself, i'm going write a book about hen -- henrietta lacks, what did you do? >> guest: i was a graduate student in an m.s.a. program so i got any undergraduate degree in biology. >> host: so you have a science background. >> guest: then i decided to study writing, and i went to this program, and part of what you do you have to write a thesis, publish a book-length manuscript. so, literally the program started and we starred our first classes, and they said, you have to come up with other book inside, which is unconceivable students, and that frequents everyone out. you can't do really a book in three years. the whole coming up with the idea and researching is impossible. so i, like many students, said, i'll write a collection ofes says rather than an entire book,

and i knew it had be to 150 pages, and so i thought i was going to write a book, collection of essays about forgotten women in science, and i did a little proposal, and i wrote at the top of the page, forgotten women in science, and i numbered one through 12, and with the page count, and henrietta lacks was on the first line, and i said, hmm, i wonder who the other 11 people will be? and here i am 11 years later. just published the book. so, there was a moment when i first -- >> host: published -- >> guest: what i did was i did all my course work and then left without finishing my thesis. and everyone said you're crazy. you don't do that. i said, i'm just going to do the book the way i need to so, technically it just -- i finished my courses in '99 and 2000, and my -- i think it says

2008. so, yeah, i did eventually get back into it. >> host: when did you meet her family? how did you find them? >> guest: i met them in -- i guess it was actually the january 1st of 2000 when i finally met any of them personally. >> host: was that exciting? >> guest: oh, yeah. it was also terrifying. i had been trying for a long time to get them to talk to me and they were resistant. it took me a year and a half -- >> host: suspicious? >> guest: i was one in a long line of people who have come to them wanting to -- particularly white people, and they just didn't trust anybody. they had had so many bad experiences. henrietta's medical records were released to a journalist and published in that book about conspiracy. at one point someone came to them and said he was lawyer and would sue on their behalf, and tried to steal the medical records. there's so many things that happened to them they didn't

know who to trust, and didn't believe anyone would do what they said they were trying to do. so they were understandably wary of me, so it took a long time to get them to talk to me and open up. >> host: what did you learn from them? >> guest: um, a lot. i think probably figuring out what i learned from them for years. i was in the late 20s at that point, and i didn't really know what i was doing. and i learn -- >> host: probably better. >> guest: absolutely. a lot of people say, wow, why did you -- i just wanted to do this thing, and there's this side i was young and inexperienced, and just thought, no, i'm just going to do this thing. i didn't understand how kind of impossible the task was. and, yeah, i think i learned so

much. i think one of the things i learned very early on was the importance of thinking of the impact that a journalist has on the people they write about. a lot of their mistrust towards me was about the way they had had bad experiences in the past, and writers had come and gone and had different effects on them. 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 to ethically -- and one of the first things i really thought a lot about was this idea of being another person who came along and potentially would benefit from them in ways they might not. and from the beginning i felt it was important for them to be something that could benefit them as it would benefit me. so i said from the beginning i was going to set up a foundation, which i did. so i set up this henrietta lacks foundation, and it's a

scholarship fund for depen dens of henrietta lacks, and they can hopefully get scholarship money for school and help children with health care. so, that all came out of this sort of time of seeing how tong-tied they were and understanding i was coming to them as another person as part of that story and wanting to approach it in a way that wasn't going to be damaging for them. >> host: did johns hopkins willingly work with you? >> guest: they never tried to hide anything. i had access to the archives. for them, this story has been out there in small versions for a long time. little newspaper articles, magazine stories, cells taken without permission, and they were relieved i was doing the

book. great, we can stop answering these questions over and over again from journalist, saying issue did you take these cells without permission? but i think there was not an understanding of what the whole scope of the story was, and i think a lot of people were -- have been learning from the book about the range of things that happened. >> host: did you talk to ancestors or to the doctor himself? >> guest: all of the above. >> host: still alive? >> guest: yeah. amazingly. her initial doctor, he is 99 now. >> host: his name? >> guest: howard jones, and he is an incredibly important scientist physician. he was hip the first test-tube baby in the united states. he and his wife were pioneers in infertility research, and he is still alive, and he remembered her case because it was unlike

anything he had ever seen. so i talked to him and i spent a lot of time with heresy application cousins who she grew up with, and her husband was still alive. so, a lot of extended family i spent time with. >> host: anything nefarious about the taking of the cells in 1951? >> guest: no. there wasn't. this was something that was absolutely standard practice. there was absolutely no ill intentions, nothing done to her. they took the sample without asking. they could have never imagined what that could have the led to we didn't know what dna was. they couldn't know that some day someone could look in the cells and learn about her kids and grandkids and great-grandkids. they had no concept they were worth any money. none of that was even a remote possibility at that point. so then this is just about trying to grow cancer cells cele cancer.

>> host: they started selling these cells, was there any discussion at johns hopkins about financial support for the family? >> guest: no. and hopkins never sold them. george gey gave it away for free, and they're public domain. you could sell them if you wanted to. there's no patents. they're just out there and any scientist can grow them. >> host: had johns hopkins pat tented them week be a different story? >> guest: absolutely. they would have profited directly. but in the 50s they couldn't have patented them. people didn't start pat tenting their lines until much later. so, that's one of the sort of tough questions about the money issue, who -- 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 trace who made the money, how much money was made, much of the money -- you can go online and some of the biggest bio tech companies started off

as a company selling hela cells, but they didn't get where they were just by selling hela sells. and then products about $10,000 a vial. but how much of that is hela, how much is the science that went into it. >> host: when you say you can buy it, buy it from whom? >> guest: byow -- bio tech companies. and nonprofit cell banks, and then the money goes into keeping cells alive, and then there are for-profit companies that -- yeah, anyone can sell them. so that's the big question. and in terms of money going to the family, you know having right now most people in america have some tissues on file somewhere, lot of theming in research. some of them commercialized. and the question of giving money

to the lackses is a big one. what about the billions of other people whose cell's are being used in research? where does that money come from? it's part of this larger discussion that is happening about who should be profiting off of parts of the human body and who should have control over that. in a lot of ways it's becoming part of the health care debate because so much of our future and medicine and drugs and vaccines and everything else starts with research on human cells that are taken from people, often without them realizing it, and then commercialized. if they're taken for free from people, turned into products, and then sold back to people, and then people can't afford them. so there's -- it's becoming part of the larger health care debate about who should have access. >> host: how do hela cells differ from them cells? >> guest: hela cells are cancer cells and still cells -- stem

cells aren't. stem cells can grow into other cells, and hela cells are cervical cancer cells. so there's specific. you can now -- science-wise you can alter hela cells, turn them into other cells, which is amazing. so scientists can make a hela cell behave like a heart cell or something else. so in some ways they have -- they have behavior that is kind of like stem cells, and they're just not normal cells. they have extremely abnormal dna. >> host: where do the kids live and what do they do? >> guest: they live in baltimore, and they're mostly unemployed and several of them are unemployed. one of them drives a truck. he was laid off from the bethlehem steel there. so he is a -- he does short and

occasionally long-haul trucking up and down the east coast. they're in their 60s and 70s. >> host: did your book, "the immortal life of henrietta lacks," bring them a lot of media attention? have they avoided the limelight? >> guest: they're not interesting. they're picking and choosing. they were on cbs sunday morning, did this big segment, which was great for them. just have them heard. one of the things that is happening -- the story is -- i worked on this for over a decade, and there was quite a while there where, like, yeah, right you're never going to finish this book. and there was this sense among her kids that nobody was going to read and it nobody was going to care because that's been

their experience for all their lives. so 0, for them, you know, the media coverage and they have come a lot of my book events, and the response has been really amazing for them, i think, because it's been really validating. and it's not -- for her children, the story has so much been about we want to get recognition for our mother, and they also in a lot of ways they haven't really thought that much about the story in term office. thes and what they experienced. in a lot of ways the book is about them and the research done on them and the fact they went through something in some ways much more traumatizing than what happened to their mother, and they're now able to open their story a bit more because people are coming to them and saying, you know, i'm sorry for what you went through and thank you for your mother's contribution and that's meant the world to them. >> host: today, would a doctor even think about taking cells

without get can permission? >> guest: its depends on what -- how the cells are taken. so, what happened to the familyn the 70s, researcher going to a person specifically for research couldn't happen today. there's a federal law that says if you go to a person to take tissue for research you have to ask and tell them what you're doing. if the tissue is taken for some other reason, you have a biopsy and sign a form that says my doctor can dispose of my tissues any way he sees fit and your name is stripped off. they're put interest a bank and if a researcher wants to do research on that they don't have to come back and get permission because it's not research on a human being, it's research on a part of them that is now detached from their name and their identity. the argument has been, well, those are anonymous samples and can never be tracked back to the person. but of course now we do have the able to find the person's

identity using dna. it's not done very often but it's technically possible. so ten years from now, what these anonymous samples are going to tell you about a person, no one can imagine that. also just found that there's this bigger issue of people just want to know what is being done with their dna and tissues and there has been lawsuits over this, and i have talked to a lot of the people involved, and across the board the -- they say the same thing, if they just asked, we would have said yes. they understand it's important research. when they fine out after the fact there's things being done with the tissues they don't know below. they're below commercialized, that's when they get angry and feel lying something bad is happening. >> host: are there other henrietta lackses out there? >> guest: oh, yeah. we just don't know their names. one of the thing interestings is i have been getting e-mail from

scientists. they're response is incredible. so many scientist whose work with her cells every day and never really stopped to ask where anyway came from. they learned they came from -- were donated from a woman, and one of the thing that has appeared is i am getting e-mails from scientists saying, thank you for the story. and they asked about cell lines. so i have been getting e-mails from scientists, please tell us about the storyline of these other cell banks. and the say, 16-year-old african-american male killed in a motorcycle accident. or 12-year-old caucasian female died of influenza. so sometimes you can get little snippets of stories and nothing beyond that. so scientists are now saying,