okay Thank You Dagnia it's a great pleasure to take the opportunity today to spend some time with you especially on a beautiful afternoon like this I want to thank you all for coming to the laboratory it's really a great pleasure for me to work here at Cold Spring Harbor Laboratory and to be part of the very close relationship that the laboratory has with the community which is really unique when we have visiting scientists come here from around the world one of the first things they tell us when we talk to them is that they admire us for this relationship that we have and this lecture today is part of our agenda as Dagnia pointed out to continue this relationship and discussion with our neighbors so that we can together help move science ahead and cure disease now today what we were going to focus on if you can turn the lights down is this amazing book that Rebecca Skloot wrote and put out in February of 2010 this book is soon to be out for three years and I just checked this morning and the the paperback copy is still on the New York Times bestseller list so it's been on the New York Times bestseller list in one way or another for practically three years which is quite remarkable and so the first question we should ask is why is this book so popular usually books about science are only popular to a very limited audience yet this book has had widespread interest among people of various walks of life and there are really four reasons that I could think of that makes this book of interest to so many people one is because it's about race two it's about ethics three it's about science and four it's about doing the right thing and what I'd like to do today is to touch on all four of those aspects of the book so to start out our character there are two characters the story one of course is Henrietta Lacks and the second is the HeLa cell that was derived from a tumor that she had so I thought to start out we should talk about a cell and this is a cartoon schematic of a cell and as you probably remember almost all cells in your body have a nucleus and the nucleus is where the DNA is and the DNA is actually the instruction book that allows the cell to produce RNA molecules which in many cases will be translated into proteins and in some cases will work specifically as RNA molecules but together all of these components will allow the cell to function there's only one cell type in your body that does not have a nucleus and that's the mature red blood cell that's circulating around in your arteries and veins and the reason is that the mature red blood cell has one function and that is to deliver oxygen to all of the organs in your body and to remove carbon dioxide and bring that back to the lungs so that it can be expelled now in the cytoplasm of every cell or in a series of different organelles and these organelles are taking place in and are taking part in a variety of processes including making proteins respiration of the cell etc and together we have this this little machine that communicates to other cells and also works on its own and allows us to survive as we do now cells come together and make a structure that we refer to as tissue and tissues come together and make organs the average human has about 60 trillion cells in our body which is quite remarkable comprising about 210 different cell types and 78 organs normal human cells have 46 chromosomes however HeLa cells have about 82 chromosomes so that immediately points out some major problem because the chromosomes contain genes and genes encode for proteins and all of this process has to be regulated in the cell and if a normal cell has 46 chromosomes and works properly and HeLa cell has 82 chromosomes you can already begin to imagine that things are going awry in this HeLa cell it's not doing a lot of things the way a normal cell does it may be accentuating certain processes it may have eliminated certain processes but it is just a cell that really is going off in all angles and creating a lot of problems and we're going to talk about those normal cells were first grown outside the human body in 1907 but they died after they divided about 50 times and this was a big big problem for scientists because if we're going to understand how cells work and how humans work and why we get disease we need to have a model to study this and the most basic model is the cell and so we need to have cells that we can grow in culture for in in many many divisions much more than 50 divisions because we have to do lots of different experiments and we have to follow things over time and we can't be limited by just 50 divisions if we're going to understand how cells and how organisms work HeLa cells however have been growing in culture for over 60 years and so you can see that they have provided us with an amazing system from which to study basic cellular processes while this whole idea of getting a cancer cell to grow in culture was a major undertaking in 1951 when they these cells were isolated from Henrietta Lacks currently we have over 2,000 human cell lines available that can be grown in culture so we've overcome a lot of obstacles over this time period now we should talk a little bit about the scientific landscape in 1951 and as you know context is extremely important no matter no matter what we talk about in life the contextual setting of the process whether it be scientific or not really impacts significantly our understanding and our interpretation of the events that occurred now in 1951 as I already mentioned cells could not readily be grown in culture for long periods of time yet we needed this to happen the double helix structure of DNA that was identified by Jim Watson and Francis Crick was not yet revealed it was not until two years later in 1953 that this structure was actually revealed in a talk that Jim gave here at Cold Spring Harbor cancer-causing genes which are known as oncogenes had not yet been discovered so we knew very little about cancer we were thinking it of it and such a primitive state that looking back from today to the way scientists were thinking about cancer back then is just totally amazing for me it was just so so basic hard to believe that they could have even imagined that they might make any major advance in terms of curing this disease or treating it the first human gene was not yet sequenced that did not happen until 1972 human gene cloning had not been carried out that didn't happen until 1978 and I should mention that many of the major milestones in gene cloning took place right here at Cold Spring Harbor lab human oncogene had not yet been cloned it wasn't until 1982 that Michael Wigler here at Cold Spring Harbor lab and several other investigators including Bob Weinberg up at the Whitehead Institute in Boston identified the first oncogene and again I can remember to this day when that paper came out this was one of the biggest advances we thought that this was the gene that was going to cure this this devastating disease back then we thought of cancer as one disease as you know today that is no longer true cancer is many different diseases and even a particular type of cancer is comprised of many different diseases and finally to really put it in perspective gasoline was 19 cents a gallon so I think that really sends the message home to you of how different the times were in 1951 not only from a scientific landscape but also for our everyday lives okay so now let's move on to talk about Henrietta Lacks and the HeLa cell phenomenon Henrietta was a 30 year old african-american woman and as it turns out who lived in Baltimore as it turns out the Johns Hopkins Hospital at the time was one of a few that would treat african-americans quite quite remarkable thinking about that now in February of 51 Henrietta presented at the Johns Hopkins Hospital with what turned out to be a very large cervical cancer by October of that same year she died and so again this brings home the idea of how severe this cancer was and because it was so severe that's why these cells were able to get put into culture so easily okay I think of an HeLa cell as a weed right you grow you have weeds growing in your garden you don't have to put fertilizer down for them you don't have to treat them in any special way they can just grow anywhere and that's how I think of a HeLa cell while it does need nutrients to grow it didn't have a lot of the requirements that your typical normal cell had and that other cancer cells had and so this put it in a big advantage when scientists were trying to get it to grow in culture it was a big plus that hadn't been seen before and it was due to the severity of this particular cancer her cancer was actually identified by a very famous physician dr. Howard Jones who was a renowned gynecologist and who later actually performed the first successful in vitro fertilization in the United States and this is his claim to fame actually now George Guy was a cancer researcher at the Johns Hopkins University and it was a routine phenomenon back then for George to obtain cells from surgeons performing operations to remove tumors from patients okay so it was just the common practice the tumor came out some cells were taken out of it they were passed on to George Guy he was focused on trying to culture cells and he would put them into culture and and try to add different nutrients to the culture medium to help stimulate them they would generally grow for a while and then they would die why was he doing this well because again context is important back then the thought was that if we're going to understand cancer why does it form how can we treat it how can we possibly prevent it we'll have to get this knowledge from the cancer cell itself and the way that we can do this is to get this cell to grow in culture and then we can manipulate it we can see how it grows we can understand the critical factors that will allow it to grow that will inhibit it from growing etc so this was a really really big focus of cancer research back in the early 1950s now as you know George Guy successfully put these cells into culture and he was actually astonished by this because he had been trying for so long unsuccessfully once he got these cells in culture he was so thrilled about this that he immediately began to share these cells with scientists around the world and sent out cultures of the cells from from Johns Hopkins University for no fee to any scientists who requested them in the effort that he could help to advance our understanding of cancer and work toward a cure so now I thought I would show you you know who are these cells what do they look like so this is a beautiful micrograph taken from a good friend of mine Tom Deerinck at the University of California San Diego and what Tom did was he grew some of these HeLa cells and culture and he stained them in three different colors okay cells usually don't have color okay they're colorless but he was able to label different structures in these HeLa cells with different colored dyes and so these blue round structures or oval structures are the nuclei of each of the cells and this is where the DNA is the green structures out here in the cytoplasm are microtubules their filaments you can think of them as architectural elements that help give shape to the cell and finally the third structure is actin which is in another type of filamentous structure and you can see the actin filaments out here again in the cytoplasm and it's these actin filaments that help the cell to move around and also act as a framework for other molecules in the cytoplasm to move on this is another image of HeLa cells again here you can see two different HeLa cells that are in what we call interphase of the cell cycle that is they're not dividing okay but cells divide usually once every 24 to 36 hours and when cells divide the genes on the chromosomes in the cell condense and here you can see the condensed chromosomes and cell the membrane that surrounds the nucleus breaks down and so now there is no separation between the nuclear contents and the cytoplasmic contents and so you can see the chromosomes now it's very easy to talk about cell division and how it happens but perhaps it's a bit hard to imagine how it happens and so I wanted you to really see how cells divide and so I asked two scientists in my lab Ileng Kumaran and Stephen Hearn here at Cold Spring Harbor if they would film HeLa cells so that you had the ability to actually visualize them over a period of about 87 hours okay and so this is going to be a movie that we're gonna watch and what they did was they took a petri dish and they added some media which contains nutrients to the dish and then they added some HeLa cells to that dish and you can see individual cells here but you can see that a large portion of the dish has nothing on it and we wanted to have a lot of empty space to give these few cells the room to divide and then to fill up the dish and so when I start this movie we're going to begin to watch cells as they go through the cell cycle and I'll point out a few interesting phenomena so you can see that the cells first of all are not static they move around and you will begin to see a cell round up and then divide it divide it into two and if you follow them you'll continuously see that they divide you'll also notice that occasionally a cell will die like right there they go into a process called apoptosis cell death and that might be because they got the wrong complement of chromosomes it might be because they they don't have enough media or nutrients etc so you continuously see them dividing here and you see that they're filling up the dish as they divide they're also moving around on the dish and we're going to watch a cell up in this area in a few minutes and it's going to divide into three instead of two it's gonna be somewhere around here it'll be a rather large cell there it goes right here yeah see it went into three this is really bad news okay because when a cell divides it has to give equal numbers of chromosomes to each daughter if you if you have a third cell that means somebody is not getting the right material right one cell may be getting more chromosomes one may be getting less etc so now you're immediately setting yourself up for problems these cells are going to have things going wrong with them and this is what happens many times with these cancer cells they they don't go through normal cell division they go through aberrant divisions and you and that's why I mentioned to you early on that most HeLa cells have about 82 chromosomes and if you actually if you counted the number of chromosomes in a population of 100 HeLa cells everyone would probably have a different number of chromosomes and so they're really very aberrant cells okay so now that you see how cells divided let's talk a little bit about some of the major advances of these cells now in some ways this is sort of a contradictory thought right I've just been telling you about how bad these cells are they're not normal they're dividing aberrantly and now I'm telling you that I'm gonna talk about the advances that came from them well the reason is that even though these cells have a lot of problems and in fact those problems allow them to be grown in culture we can learn a lot from them okay and the reason that we can learn a lot from them is they still have to undergo all of the fundamental processes of life okay that genes have to get turned on they have to make RNA RNA has to make protein protein has to be transported communication has to take place between cells so we can learn the enormous amount from these aberrant cells and I think it wouldn't be wrong to say that we have probably learned significant amounts of information about every single major biological process from HeLa cells so quite remarkable yet quite unique so early on HeLa cells were used to actually propagate the polio virus which then led to the development of the vaccine against polio by Jonas Salk ok so again the virus was able to grow in these cells and then to break the cells open and release more virus particles the virus needed the cell as a substrate to allow the virus to grow the cells were sent up in the first space missions to see what would happen to human cells in space right before we send humans up in space better check on the cells and make sure that the cells don't explode or something awful happens to them rather than send up a human being the effects of radiation on human cells were tested they were used in studies to help map human genes they were used to prove that human papilloma virus causes cancer these HeLa cells in fact contain human papilloma virus they were used to help identify the mechanism of tuberculosis and HIV infection again the cells were infected with these viruses one had this cell system in culture and one could easily study how does the virus get into the cell it didn't matter that it was a HeLa cell it just mattered that it was a human cell and we need to understand how the virus gets into a human cell they were used to discover that human cancer cells contain telomerase this is an enzyme that regenerates chromosome ends and prevents them from aging and dying like normal cells this is a very important process and in fact one of our former faculty members here at Cold Spring Harbor Carol Greider Nobel Prize for work that she had done when she was doing her PhD in California at UCSF with Liz Blackburn and ironically the fact that dr. Chester Southam at the sloan-kettering Institute in New York City injected HeLa cells into uninformed human test subjects to see how cancer initiates led to an NIH investigation that's National Institutes of Health and the initiation of medical review boards and informed consent by patients now this is really a remarkable a remarkable point Chester Southam turns out to have been the chief of virology at the sloan-kettering Institute and he was a physician who was overseeing patients with leukemia as well as other cancers and when these HeLa cells came out everyone was very anxious to try to understand how they caused cancer and so on and so what Chester did was he actually took HeLa cells and he injected them under the skin of these patients who had leukemia and was able to observe that tumor nodules grew under their skin now of course this was totally without their consent but you have to also remember that there were no guidelines in place back then he was doing these experiments in 1953 1954 there were no guidelines so you know you can decide yourself if this was an ethical thing to do or not now once chester did these experiments and found that these cells were causing tumors in these cancer patients he wanted to take it to the next step and he wanted to see what would happen if he was to inject these cells into the skin of normal patients so he went and contacted a Penitentiary in Ohio and prisoners in this penitentiary felt that they were doing a service to society by allowing him to inject these tumor cells under their skin and he found that the tumors grew but much more slowly and much fewer tumors grew okay he then left the sloan-kettering Institute and he went to a hospital in Brooklyn New York to continue his studies as well as his clinical affiliations and at this hospital in Brooklyn he tried to take two of the younger physicians there who were under him into his study that he was doing and he tried to convince them to continue these injections so that they could study the effect of these HeLa cells in humans and these two young physicians refused to do these experiments and he put pressure on them and they still refused and finally it got to the point where these two doctors basically said we're out of here we quit and when they quit they sent their letter of resignation to a local newspaper in New York City and this was published and I don't have to tell you what happened after that obviously Chester saw them was in a lot of trouble and in fact he lost his medical license but unfortunately it was only for one year that he lost his license but it was through these awful events that the National Institutes of Health actually realized that there better be some guidelines in place not to allow this kind of thing to happen you can't basically use humans as test subjects without their direct permission and so this really represented as I pointed out here this was the starting point actually of guidelines for the ethical use of human subjects and so it's an important point actually even though it's an awful point to discuss that was about 1953 1954 so it was it wasn't too long after HeLa cells were first identified okay so now I just wanted to say a little bit about HeLa cells in Cold Spring Harbor lab I told you about some of the major events that in science that they played a part in I want to now tell you some major events here at the lab that were that were very positive events in fact in 1970 Joe Sambrook who was at Cold Spring Harbor lab actually isolated a native form of a very important enzyme in cells that allows genes to get turned on and this was very important and the reason that Joe was able to isolate this enzyme was that he could grow up enough HeLa cells so that he can get the molecules of the enzyme out of those cells and characterize it and this is this was a very important early event toward our understanding of transcription in 1979 Osborn and Weber identified a series of proteins in cells that form filaments they're not the microtubules or the actin that I showed you they're a different family of proteins they're referred to as keratins and these proteins were later shown to be very useful in cancer diagnosis and staging cancers so again a very major advance being made toward understanding cancer from using these HeLa cells and characterizing specific protein molecules that these cells were making in the 1980's david Beach's lab at Cold Spring Harbor identified a series of critical proteins that control the cell cycle remember I showed you how these HeLa cells are dividing and they're dividing every 24 hours now an important understanding of cancer as tumors grow and become bigger you want to understand the proteins that regulate that division process in that cell cycle and David's lab which was a lab using yeast initially to study these proteins then moved into the HeLa cell realm to identify the human proteins that were involved in this process and made some very very important advances in 1981 Walter Keller's group again taking after Joe Sambrook's work looked at making transcription extracts that is transcription is the process of converting a DNA making a copy from DNA into RNA he made extracts out of the cells that allowed this process to take place in a test tube okay it allowed people to then study this process in a test tube rather than in a cell which then allows you to be able to characterize it in excruciating detail so that you can really understand it and then figure out how it goes awry in disease and then finally in 1990 Adrian Krainer who is still here at Cold Spring Harbor purified a factor a protein molecule that is critical for the editing of RNA molecules so when an RNA molecule gets made it has regions that are really important they're called coding regions and then there are regions that link the coding regions that are called introns and in order for that RNA to make a protein you have to cut out those introns so you're editing it and then you're putting the two coding regions together and then you make a chain of the coding regions Adrian identified a very important protein that functions in that process okay and he subsequently demonstrated that not only was this protein important for this basic cellular process but the protein turned out to be an onco protein if you overexpress this protein in certain cells it will cause cancer this is a major finding okay and the only way that Adrian made this finding was because he was a basic scientist he was he was interested in understanding the basic process of the cell how RNA gets edited and because he had this understanding and the depth of this understanding he could then use that and see how that protein might function in the cancer process so I use this point just to stress how important basic research is you know sometimes we think about well you know shouldn't we all be doing research directly focused on a disease with a specific question you know honing into that disease well sure we should be doing that type of research and we are but we also have to do basic research because many times you don't know where that diamond is going to come from you learn enough about a basic process it's going to connect the disease there's no question about it and this is a beautiful example that happened in Adrian's lab now I want to take that one step further to really remarkable finding because Adrian by understanding this process of RNA editing has recently used this knowledge to figure out the basis of a childhood disorder called spinal muscular atrophy and this is an awful disease in kids and they die at a very young age it's a muscle disorder and because of his knowledge in this splicing process Adrian came up with an ingenious approach where he could alter the editing process in the cells in an animal ok and so he made an animal model of this disease and it had all of the features of the human disease and then he developed a drug and he treated the mouse and the mouse got back its normal ability to move around and walk and use its muscles it was amazing I every time I heard him give a talk on this I was more and more amazed well guess what this work has this year gone into clinical trials a number of hospitals around the country one being Columbia University Medical Center in the city so again I can't stress enough the fact that this went from basics science to really a clinical situation and we're very hopeful that this drug will work and move ahead in various stages of clinical trials and be able to help these children with this dreadful disease and many other scientists now and other fields are saying wow that's pretty remarkable maybe we can use this approach in the disease that we're working on and so scientists are looking to see if that approach might be applicable to their disease systems so again really a beautiful example now why am I talking so much about this it's because Adrian had to purify this protein okay and he decided to purify it from HeLa cells and the reason is that the protein is present in very few copies per cell and he needed lots of cells to get enough of the protein to understand how it functions and it turns out that he had to get trillions of cells in order to extract enough of the protein okay and trillions of cells came from thousands of liters of HeLa cells so this was an enormous undertaking on his part and it was only because he could grow these cells to such a high density and in such large amounts that he could have purified this protein okay and then many many studies have been going on here at Cold Spring Harbor from the 70s to today using HeLa cells to localize various proteins that we are working on to see where do they sit in the cell and where do they function in the cell and so we're basically using the HeLa cell as a vehicle to really understand where the molecules that we're interested in studying reside and how they work okay so this then brings us into this whole issue of informed consent and patients rights and we already sort of touched on it a little bit when I talked about Chester Southam and him injecting HeLa cells into patient's skin but also we have to keep in mind the fact that when Henrietta Lacks walked into the Johns Hopkins Medical Center her tumor was removed and her cells were given to a scientist to try to grow in culture she had no knowledge of this okay again there were no rules back then so no law was broken you know nothing nothing wrong in a sense was done because the that was the that was the general practice at the time no I'm not saying that that is the right thing to do but that was the general practice back then again context is important but you know what then happened to us it wasn't until 1971 when George Gey retired and there was a ceremony to honor him that it came out in that discussion and papers from that that HeLa cells actually came from an individual by the name of Henrietta Lacks okay up until that point up until 1971 nobody knew who Henrietta Lacks was okay they used the acronym HeLa HE is from Henrietta la is from Lacks but no one knew who it was and in fact in some cases HeLa was referred to as Helen Lane to keep Henrietta Lacks anonymous okay we would never use an acronym like that today because the acronym would have to be so anonymous that you couldn't even guess who the individual might be that these cells were coming from but you could imagine how the family felt when in 1976 a story came out in Rolling Stone magazine about this whole HeLa cell thing and the family found out about this and they were outraged right you know here was their mom who was in a hospital had an awful tumor died her cells were taken they were never told about it they thought that lots of money was made from these cells there was a lot of feeling about well maybe you know part of that should be ours you know we're we're not very wealthy we can't really afford health care you know why are all these people having all these things with cells from our mom and so you could imagine you know how they felt back then thinking about this whole thing and it was a really really hard process for them and a long process for them I mean after the fact in speaking to their sons Rebecca Skloot acknowledged in her book that they said you know we would have been happy to have the cells donated we just wanted to know about it and so again that's where my point about doing the right thing comes up right I mean I think everyone would be happy to do something to help their fellow man or woman and society but you would at least like to know that you have the option to do it and and then it's happening and they were sort of kept in the dark back then and that created a lot of problems as you might imagine okay so this whole idea of that informed consent and patients rights really can be carried all the way back to World War two when doctors in Nazi Germany were conducting research on prisoners and concentration camps and after the war these doctors were tried at the Nuremberg trials and it was from the Nuremberg trials that in 1947 a document came out which was referred to as the Nuremberg code and this is an international document stating that voluntary consent is mandatory for any clinical research so this was a very very important statement but also it was not a law it was simply a statement there was no jurisdiction in essence over this point in 1945 to 1966 in fact the NIH funded 2000 research projects and none of them used informed consent okay 1964 was the next major event where the Declaration of Helsinki was put forth and this was a set of ethical principles regarding human experimentation and this was the first set of ethical principles that was put forth by the medical community themselves so this was a very important and major statement however once again it was not legally binding and in fact has gone on undergone six revisions so it was simply various groups stating this shouldn't happen but nobody was overseeing it and making sure that it doesn't happen in 1966 due in great part to these studies by that Southam performed the NIH came out with a determination that independent institutional review boards must be present at institutions and these review boards must evaluate any investigators proposal to do research which is using human subjects so this was very important in 1979 of the National Commission for protection of human subjects known as the Belmont report again another very important report which was prompted in part by the Tuskegee syphilis study which again you might remember was a situation that was horrendous where individuals were infected with syphilis bacterium and those individuals that had a syphilis were not being treated when we had in hand penicillin which could be used to treat this dreadful disease in 1991 the Department of Health and Human Services developed what's known as the common rule and this is a rule overseeing all of this human subjects research and it was adopted by all agencies that conduct or fund human research that's above and beyond the National Institutes of Health and finally in 2000 the NIH required anyone working with human subjects to take an online course and I think this finally hit the nail on the head because you know now you have to you have to go online you have to answer all these questions and and so on and so forth and it's quite elaborate and then you have to put your electronic signature and so now it is actually documented and is actually policed and this is taken extremely seriously we have to have very very careful and elaborate protocols when dealing with human subjects human samples etc and we are very very serious here at Cold Spring Harbor lab as well as at other institutions around the country for this because if we fail to do this correctly we can actually lose our funding and that would that would be absolutely horrendous obviously so you know everyone is extremely diligent in fact we have now gone so far that we probably have gone overboard on the other extreme right which happens many times right you don't do things right for a while then there's the big wake-up call and then you try to compensate you go way overboard and then perhaps you have to modulate a little bit because there are cases now where it might take us a year to get a protocol approved just because it's going through such scrutiny and in some cases it is a bit overboard so again just to summarize this when samples are collected solely for research purpose purposes an institutional review board must review and approve the research proposal the wording of the patient consent forms are approved every single word is is looked at in read and reread and evaluated for every possible meaning and definition etc and samples cannot be taken without the patient signing such forms and the samples are coded to conceal the patient's identity usually with some random set of numbers which have nothing to do with the patient it's not that birthday it's not their social security number it's not their phone number you know totally random you would never find out who this patient was okay so that's a whole lot about about institutional review boards and human subjects but there's one more point that we should talk about today and that is who owns the material okay so in other words the sample is taken but who actually owns it and this is a whole separate issue in 1999 the RAND Corporation actually published a report indicating that more than three hundred and seven million tissue samples from more than one hundred and seventy eight million people were being stored in the US right whenever you go to a doctor many times you know they'll take a biopsy or or a procedure and then they'll put it into a block and then they'll take some sections and stain it for something and then you know come back and say oh you're fine but then these blocks have to be kept for ten years in storage in case there has to be follow-up etc so we're basically you know drowning in in these box and samples and this number obviously is increasing exponentially so there's a lot of material around now the common rule which is part of this declaration of Helsinki sets forth the composition and function of these institutional review boards however this common rule does not address the question of who owns human tissue samples that's used in research and it does not apply to tissue obtained postmortem there is no clearly defined regulation regarding the ownership of human tissue samples and who can control their fate the ownership question does not depend on whether the patient consented to the use of his or her excised tissue for research no laws or regulations exist regarding ownership of leftover tissue fluids tissue blocks however IRB approval is required for their use okay so for example let's say I'm a scientist here and I want to do some experiments on leukemia cells okay and I contact the clinician at Northshore LIJ and he says oh yes you know we have these blocks of cells we can provide them to you but I would have to put together a protocol that would go through our IRB stating exactly what I'm going to do with these samples showing how I will not know anything about the patient's identity I won't have just a random number etc and so this whole protocol is in place but certainly I don't need to have the patient's consent to do that in the case of tissue being excised for clinical purposes or donated for research courts have determined that patients do not retain ownership rights and Excise tissue so bottom line once it leaves your body it's it's gone you don't own it that's that's that's the way it is although donors have continuing rights regarding the use or secondary use of their samples they do not own those samples or control their deposition and so I want to just now point out to you three major court cases that have addressed this specific issue or aspects of this specific issue and the first the most famous is the case of Moore versus the Regents of the University of California and what this was about was an individual came in to UCLA Medical Center his name was John Moore he had a here he's hairy cell leukemia and as part of his treatment his doctor suggested that his spleen had to be removed his spleen was removed and cells were isolated from his spleen the surgeon had permission to remove the spleen now cells were taken from the spleen and they were modified by the physicians and their collaborators to put them into culture so that they could study hairy cell leukemia okay but the patient didn't know about it and so after the surgery and and the patient was released from Hospital he moved to Seattle and the physician kept bringing him back to UCLA Medical Center for follow-ups and he kept saying can't I get a follow-up at a hospital in Seattle why do I have to come back to UCLA and they said no no you have to come back here so he was convinced and he kept coming back and he kept coming back well after a while he realized that basically they were just taking more samples from him and they were monitoring the progression of his disease both in the laboratory as well as for clinical reasons so he filed a lawsuit against his physician and UCLA and it went to court and he basically lost the case so then he went back and went to a higher court and tried to get this suit through and he won the case and then UCLA went back to yet a higher court which was the Supreme Court of California lawyers made a significant amount of money in this I would imagine but in the end what happened was the Supreme Court stated that any ownership you have in your tissue vanishes when they were removed from your body with or without consent so that that was a very critical case the second case was a 2003 case Greenberg versus Miami Children's Research Institute in this instance a family came to Miami Children's with two twins who had a very rare childhood disorder called Canavan disease and it was rare and nothing was known about this disease and so obviously the family wanted to help their children and so in order to help the physician learn about the disease and try to develop a cure or treatment for the disease the family developed a registry where they could get other families who had children with this disease in and they could the physicians could then get samples from those children's and then in other words to build up a data bank because you can't study two people and find a cure to something so the family helped with that in addition the family provided money to the physician to help fund the studies that what he was doing because obviously they wanted to help their children so they really played a huge role in helping this research well it turns out that the physician actually found what was wrong he found an enzyme defect in these kids he filed the patent the family wasn't informed and the patent was licensed to a biotech company to be used as a way of diagnosing the disease so obviously the family was not very happy I mean they were happy that a genetic test was now developed but they were not very happy that they weren't informed about this and they were not getting any royalties if you will from this since they felt that they provided significant input into this in addition obviously to what the clinicians did so they're a lawsuit ensued and what happened in this case was the court determined that any property rights the patient had were surrendered upon tissue donation once again confirming the Moore versus the reaches of the University of California case however in this particular case the plaintiffs received an undisclosed settlement as the court felt that they played a significant role in getting additional patients to this position and in funding part of this research so they got some monetary settlement finally the last case that I want to bring to your attention is 2007 case catalona versus Washington University and this was a case where a very prominent prostate cancer physician William catalona had a position at George Washington University and at some point in time he decided that he was going to leave that University and go to I believe it was Northwestern University so when he moved to this other university he requested that all of those tissue samples that he had been collecting over the years from these prostate cancer patients be transferred over to this new place that he was at and Wash.U said no way those samples belong to the University they were they were acquired here at this institution they belong to this institution you can't have them so William catalona then sent letters to every single one of his patients and asked them if they would sign letters saying that they would allow those tissue samples to be transferred to this second University he got all those letters together sent them to Washington University and they said no we're not we're not giving them so this all went again to the courts and finally the court stated skip this that the university not the physician or a patient owns the tissue samples so wherever they were collected from is where they belong I'm certainly there might be a case where a university might say okay fine you know we'll give the samples to you but they don't have to be forced to do it so this is sort of where we stand right now in terms of tissue once it leaves an individual it's no longer yours obviously you know it's being used to help society and so you know if you think of it from that good perspective I think it's a positive thing so now finally I want to end just by saying a few words about Johns Hopkins University and Henrietta Lacks because as you imagine as I mentioned early on there was a very tense relationship when word came out that these cells were taken from her the family had no knowledge etcetera etcetera and if and you know the environment in 1951 was with such that race was playing an important issue here remember I mentioned that Johns Hopkins Hospital was one of the few that even accepted African American patients and so there was a very uncomfortable feeling you know in many different ways about this whole phenomenon so actually I think one of the the best aspects of the Rebecca Skloot book to me aside from the book being a really fantastic story and everything is the things that happened at Johns Hopkins University once the book came out and really quickly once the book came out so remember the book came out in February of 2010 virtually immediately after that the annual Henrietta Lacks Memorial Lecture was established at Johns Hopkins University to honor her okay and her whole family actually was invited and came to that first lecture and had been very very supportive of this so they they seemed to be on board now in lots of these events that are honoring their mom the Urban Health Institute initiated a Henrietta Lacks Memorial Award in 2011 which recognizes and supports Baltimore community organizations that collaborate with Johns Hopkins University to improve health in the city another positive thing the Lacks family HeLa foundation was set up to provide direct help to cancer patients through financial and psychological support the Virginia General Assembly honored Henrietta Lacks in 2011 the Henrietta Lacks East Baltimore Health Sciences Scholarship was set up just this year sponsored by Johns Hopkins Health Center to support high school graduates to go to college and there are educational displays honoring Henrietta Lacks and HeLa cells at Johns Hopkins University Medical Center and an extremely prominent position outside one of their major auditoriums so again you know they've now stepped up and recognized of the significant contributions that this individual unknowingly made through cells that were isolated from a tumor that she had so all in all you know taking context into perspective you know of course we wouldn't do that today but that was the time that's how things were done back then I'm not saying it was right but I think we have to look for the good in all things and I think in the end a lot of good things have come from these HeLa cells that have helped move science ahead that have helped move us toward a better understanding of cancer and even other diseases because they've allowed us to understand basic processes in cells and by understanding this this is how we will help each other and help society so I'll end there.and thank you