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Ice on the Windshield
Sunday December 31, 2006
Saturday night, the 28th of January, 15 minutes till 8 p.m.
I’m in my office, or to be precise, the ‘thought chamber’, awaiting the arrival of The Nowhere Man for the second of what promises to be many interviews with him about MasterBlog. The first interview had been all too short, lasting but 30 minutes, hardly long enough to get comfortable, but this one is scheduled to last a full 2 hours, and although I’ve prepared for days, I cannot deny the excitement and the nervousness I feel at this moment. As I stare at the pale-white door that TNM will enter the chamber through, it swishes open as if I’d wished it open; TNM is early as I had anticipated, and as he steps through the oval portal into the chamber, I resist the urge to rise, and remaining seated, I merely look up at him as he smiles at me, and says, “Mind if I smoke?”
EA: So, we already have an ‘inside joke,’ right?
TNM: Yeah, I sorta like them.
EA: Smokes or Jokes? I say with my own smile.
TNM: Both, he replies as he takes the chair next to mine, immediately going into the ‘comfort-recline’ position, and attaching his 'wrist console'.
EA: He’s hardly settled into the chair before I’m saying without preamble – “You said in our last interview that - The bloggers of MasterBlog knew that something had to be done in order to preserve the blog, and although they didn’t have the answer - they believed that it was within them, and all they had to do was to find it.”
TNM: That’s correct, but one thing you should understand is - that when I speak of the bloggers of MasterBlog, I’m actually only talking about approximately 30-40 bloggers, ‘initially at least,’ out of thousands.
EA: I’m aware of what he’s talking about and as I begin my next question with “Can you,” a match flames in his hand, and lights a cigarette I never saw go in his mouth, causing me to hesitate for a second, before finishing the question, “tell me how they found it and flesh out your answer with details?” As the question lingers while he thinks about it, I wonder where the phrase “flesh out” came from, for I don’t ever remember using before.
TNM: Like I said, they believed the answer to be within themselves, and it was; a blogger by the name of “Sampson,” was the first to discover it, and although the entire process was difficult, the initial step was deceptively simple.
EA: Hearing his voice and picking up the slight echo effect sometimes associated with the ‘thought-chamber,’ I’m aware that it, although gravelly from cigarettes, has a surprising ‘smoothness’ about it, and when matched with perfect pronunciation of the words he uses, and the slow, measured cadence that they are delivered in… is near hypnotic.
TNM: ‘Sampson’ was one of those types of bloggers who spent long hours reading and ‘re-reading’ the many different blogs on the site, and through this time that he spent reading, he’d slowly came to realize that a simple message was being repeated ‘over and over,’ by many bloggers. To fully understand this you must realize that another blogger whose handle was “Micro-Burst,” had many months before, started preceding all his comments with a string of seemingly meaningless symbols and numbers. He did this by holding the shift key down and typing a number key using the numbers above the top row of letter keys on the keyboard, which produced a “symbol,” and then next, by letting up on the shift key he would again hit a number key, this time getting a “number.” By alternating back and forth like this he would type out a string of meaningless symbols and numbers. “Like this,” he said, as he handed me a sheet of paper with the following written on it.
@2%1!2$1.
As I studied it, he continued; “this little quirk didn’t catch on at first, but within a few weeks many bloggers were doing it, and over time it became the thing to do, although there were many different variations, and some didn’t even bother to 'alternate' the use of the shift key at all, merely typing a string of symbols without numbers.”
ER: As he paused for a second, apparently getting his thoughts together, I remained still, as I mentally pictured the keyboard. Although ‘typing with a keyboard’ was not something I did anymore, I’d used it extensively while in college working on a ‘project’ about the olden day typewriters, and could easily recall the basic arrangement of the letters, and numbers.
TNM: What “Sampson” discovered was that – @2%1!2$1 – appeared quite often. In fact, out of several thousand comments over a period of months, that particular string appeared in more than a fourth of them. This discovery while intriguing by itself, became even more interesting when he worked out a relatively simple way to decipher the symbols/numbers into what he soon became convinced - was a form of subvert communication.
ER: Pausing again, he hands me another sheet of paper. On this sheet is a picture of an average, everyday keyboard, much like the one I’d used in college.
TNM: If you’re look at the keyboard and the ‘string,’ he’s saying, it won’t take but a second to see the code. The first symbol is the “and” symbol,” followed by a numeral “2”. If you’ll look at the drawing of the keyboard you’ll see that the “and” symbol is at the top of the keyboard and below it to the right, diagonally, are three additional keys, w, s, and x, and that the “s” is the second one down. The second symbol is the “percent” symbol and counting one down in a diagonal way you arrive at “t.”
ER: I’d placed the two sheets of paper on my desk console while he was talking, side by side, and as I look ‘back and forth’ at the string of symbols and numbers - @2%1!2$1 - and the drawing of the keyboard, he continues.
TNM: As you can see “@2” equals “s,” and the next set, “%1” equals “t.”
ER: I easily see what he’s pointing out; each symbol is followed by a number, so when looking at the ‘@’ symbol, and counting downward and diagonally ‘twice’, as indicated by the ‘2’ you arrive at the letter ‘s.’ The same thing applies for the second symbol ‘%’ which as he’s pointed out is a ‘t.’ As I work my way mentally through the entire string, the word “star” emerges. Pulling out my pen I write it down on a sheet of paper on my console. It looks like this:
@2 = s
%1 = t
!2 = a
$1 = r
Laying my pen down, I look up at him and say, “I see what you’re talking about, but the significance of this little code, while somewhat interesting, is not much, but, ‘if it was appearing a large percentage of the time,’ I guess one could conclude some kind of significance from it.”
In the ‘silence’ that followed, I added, “I really don’t see how a connection could be drawn from this.”
TNM: Which was pretty much the ‘opinion’ of the bloggers when Sampson presented it to them.
ER: “I think we should take a break,” I tell him as I stand up, wondering exactly where this is all heading.
| | Posted by -ice- at 8:34 AM - | |
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Monday December 25, 2006
North American Planet
First Interview of ‘The Nowhere Man’
Editor’s Attachment: Edgar Allen conducted this interview in the offices of ‘North American Planet’ on January 14th - 2106. Mr. Allen began his career with us shortly after his graduation from ‘Yale & Associates,’ in early 2090 rising to his present status as ‘Deputy Executive Editor,’ in September of 2099.
Comment from Edgar Allen: This long sought after interview with ‘The Nowhere Man,’ would have never occurred without the help of several people, of which, Howard Carson, CEO of the ‘North American Planet’ has played a prominent role. It was his visionary pursuit of this incredible story that set in motion all the various and necessary elements that allowed me to actually sit down with TNM. We all owe an immense debt of gratitude to Howard for championing this cause when nobody else would, and for his persistent willingness to put his reputation, and money, on the line to bring this story to the eyes of the world. On a personal level I am deeply honored that Howard chose me to conduct the actual interviews, and will forever be in his debt for the opportunity. It was during the first interview session with TNM, as I listened to his gravelly voice, that I became acutely cognizant of all the questions you the reader, might want to ask this man, and thus it became one of my primary goals ‘to be your representative,’ and to not only listen, but, also, to probe to the best of my ability the extremely compelling psyche of this man, as well as the story he told me. It is my fervent desire that after reading this account, you will be able to say that I completed my mission in a way that has brought you not only ‘understanding,’ but also a much clearer picture of ‘MasterBlog.’
The Interview Scene: My office on the 192nd floor of the ‘NAP Building’ in the heart of New York City. Since I knew beforehand of the busy schedule of not only the TNM, but also myself, it followed that these interviews would actually be conducted over the span of several months. Therefore, I decided ‘early on’ that we would have our talks in the “Thought-Chamber,” which most of you are familiar with, but for those who might not be, is simply the product of the latest advancement in ‘Tech-Interviews,’ employing ‘relaxation massages,’ and ‘memory enhancement procedures,’ as well as the latest technical breakthroughs in ‘explanation blurbs.’
Overview of ‘MasterBlog’ – Today the world knows MasterBlog as the town that is a place like no other in the world; a place we all want to go someday. Few, however, know the story of how a small blog site by the same name, transformed the history of the world with it’s own version of nirvana. This is that story.
The Nowhere Man – 1st Session - 14 January, 2106 – This ‘first session’ is scheduled to be short, merely a ‘introductory’ for both of us and as I look at him, the artificial sunlight spraying across his face, the first thing I notice is exactly what Howard Carson had warned me about, which is that TNM bears an uncanny resemblance to Humphrey Bogart, an actor from the early 20th Century. As connoisseurs of the ancient movies of that time period, both Howard and myself are very familiar with Mr. Bogart’s movies, and thus his physical appearance. Still, it’s somewhat unsettling to me, but I brush it off and begin to mentally form my first question.
TNM: “Mind if I smoke?”
EA: His impromptu question surprises me, and causes me to stumble a little by first answering him in a negative fashion with “yes,” only to instantly go the other way with “I mean no.” He merely raises his eyebrows slightly as he pulls a pack from his shirt pocket, and as I watch in mild fascination, he performs the age-old ritual of retrieving a cigarette from the cellophane covered pack, and lights it from the flame of a match that he makes ‘come to life,’ with a mere scratch with his thumb-nail. As he breathes in the cigarette, and exhales ‘blue-gray smoke’ into space that has never seen the like, it mixes with the smell of sulfur to create a distinct aroma of its own.
“What should I call you?” I ask, as I inhale what was once ‘deadly second-hand smoke.’
TNM: “why not - the nowhere man?”
EA: “I’m ok with that,” I tell him, though my nerves are somewhat tangled, and clearing my throat to gain a few seconds, I add, “and you can call me Edgar.”
TNM: “Ok,” he says, eyeing me closely.
EA: Rolling my finger over the ‘relaxation massager’ on my wrist console, and immediately ‘relaxing,’ I say, “what would you ascribe to be the single most important thing that propelled MasterBlog to the forefront?”
TNM: “Oh that’s easy”, he says, as he stands and walks to the corner-curved window of my office, and stares at the re-creation of a grassy hillside ingrained in the glass. “Although the people of MasterBlog were the unknowing instigators of what was to come, it was their impassioned desire for a different way, a wholesale change in the way humans thought about life at the time, that ‘sparked’ the great revolution.”
EA: This statement of his - has not told me anything I didn’t already know, and in an attempt to focus better, I say, “But what about the people, and why do we not know anything about them?”
TNM: “The people on MasterBlog always believed that they had been brought together by some mystical force, and that through unknown methods, this ‘force’ was trying to communicate with them.” Throughout the early years of its existence there were small skirmishes between various bloggers, and factions developed quite naturally from this friction. Still, in spite of the internal squabbling, and the uncertainty it brought, MasterBlog produced many fantastic individual blogs, and the not so ‘subtle’ difference between ‘it’ and other sites of the day was easily discerned by any who happened onto the site. However, the uncertainty that ran rampant through MasterBlog was always looming on the horizon, and many thought it was only a matter of time before everything crumbled.
ER: “But, it didn’t,” I said.
TNM: “No, it didn’t”.
ER: I look at him expectantly, waiting for him to go on.
TNM: “They knew that something had to be done in order to preserve the blog, and although they didn’t have the answer - they believed that it was within them, and all they had to do was to find it.”
ER: I sit quietly, waiting.
TNM: The problem of course was not knowing what to do, so, as in similar situations throughout history, ‘they circled their wagons.’
ER: “But they did find the answer.”
TNM: “Of course.”
ER: As much as I want to hear more, I am forced to acknowledge that our time is up. Clearing my throat, holding a hand in front of my mouth as I cough, I tell him, “that we are now scheduled to break and re-meet 10 days from now, on the 26th of January.”
TNM: Standing, he hands me his wrist console, smiles, and walks out of my office.
| | Posted by -ice- at 9:54 PM - | |
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Thursday December 21, 2006
So, my story of the 12-year-old girl named Sissy proved to be fairly interesting through two chapters. The ‘hook’ seemed good, after all who wouldn’t be somewhat bemused with the possibility of immortality? I don’t know which of the 7 possible ‘plots’ it was, nor do I think it important. Ordinarily most of the importance (of any story) lies in whether or not it titillated the reader enough to entice him/her to actually read the succeeding chapters, and attain some form of enjoyment/pleasure from it, but not in this case.
The ‘importance’ of this story was to introduce the reader to inversion, which is nothing other than an ‘effect’ to bridge the reader to the gateway, a mystical place unable to feel our touch or vice versa, but also a place to where we’ve been going since birth. The young girl was supposed to be a woman who had died almost a half-century before, but in fact she was nothing more than a figment of my imagination transferred to your own imagination and revealed here as exactly that, which reverses your train of thought from a perceived reality to reality itself.
Any writer, of course can easily accomplish this, since he/she controls everything by being the writer of the story, though when used as inversion it becomes a somewhat different entity. For example, while it’s true that my story was fiction, it is also true that the story of *Ella Mae is true; only her name was really Henrietta. She really did die of cancer in the early 1950’s, and her cells really were recovered and passed around to researchers all over the world. It’s also true that her cells were some of the strongest ever, which ultimately led researchers to make the claim ‘that left to grow unrestrained (they) could of eventually taken over the world.' Although we will never know (hopefully) the truth of that claim, we do know that her cells led directly to a vaccine for Polio, among other things.
Inversion as used by me in this instance should have caused you to stop and examine exactly what you were told by the story, and whether or not it helped you to bridge the gap between reality and truth - to the gateway. In this case the story was delivered as reality, while in actuality the delivery was merely the reader being led astray by the writer, while the story itself contained the gateway to the truth.
It is this ‘gateway’ construed by a universal language to which we’ve been striving for since birth that eventually will cause us to discover the truth. The word ‘eventually’ is the important word of that last sentence, for the truth of the matter is that we are a ‘ways’ from our discovery of the gateway, just as in my story, the “Hiltie Group” were a ways from their quest of immortality. Gibberish in the fact that neither we nor they, have attained the goal we’re seeking, but ‘starkly revealing,’ given the fact that what we can imagine we can achieve, and in fact, “are meant to achieve.” As any who’ve read my material can attest to, I tend to speak a language of what is to come, contrasted with what has already come and gone. A theme done over and over again down through history in as many forms as one can think of, in many different languages. Is it such a ‘leap’ of faith to imagine that mankind is trying to tell itself of what’s to come as well as what has already happened, and does it not follow that after many, many hundreds of millions of telling and re-telling our stories, we might someday discover our destiny?
*Ella Mae's story was taken almost verbatim from an article written by Rebecca Skloot, and published in John Hopkins Magazine, in April of 2000. It is fascinating reading in and of itself and I urge you to read it for yourself. It is posted below.
APRIL 2000 Pioneers of Discovery· · · · · · · · · · · ·
Henrietta's Dance By Rebecca Skloot
Not long before her death, Henrietta Lacks danced. As the film rolled, her long thin face teased the camera, flashing a seductive grin as she moved, her eyes locked on the lens. She tilted her head back and raised her hands, waving them softly in the air before letting them fall to smooth her curlers. Then the film went blank. Henrietta danced in Turners Station, a small, segregated Baltimore community where she moved in 1943. She had come by train from a plantation town in Virginia, leaving her kin behind, most still picking tobacco long after freedom from slavery. As she sped toward Baltimore, at the age of 23, her husband, David Lacks, waited in their new brick house with a stove that burned gas instead of wood. Henrietta knew she was heading into a more modern world. What she didn't know was that less than a decade later, after giving birth to her fifth child, her womb would give rise to a new age in medicine.
On February 1, 1951, under the cover of a solitary tree, David Lacks stared through the window of his parked car, watching the rain fall. He and his five children, three still in diapers, sat outside Hopkins Hospital, waiting for Henrietta. A few days earlier, she had found blood spotting her underwear. Now, Howard Jones, a Hopkins physician, found a smooth eggplant-hued tumor glistening under the light on Henrietta's cervix. He touched its surface, shocked by its supple texture, and Henrietta bled. Jones carefully cut a section of her quarter-sized tumor, sent it to the lab for a diagnosis, and sent Henrietta home with her family. Then came the news: the tumor was malignant. Henrietta returned to Hopkins eight days later. While David and the children waited under the tree, physicians covered her cervix with radium in an attempt to kill the cancer. But before applying the first treatment, a young resident took one more sample. This one went to George Gey, head of tissue culture research at Hopkins. He and his wife, Margaret, had been searching for a tool for the study of cancer: a line of human cells that would live indefinitely outside the body. If they succeeded, they could observe and test human cells in ways they could never do in humans. Eventually, they could discover the cure for cancer. They were sure of it. After two decades of failure in their laboratory attempts, the Geys turned their attention to cervical cells, at the request of Richard TeLinde, then Hopkins chairman of Gynecology. TeLinde wanted cervical cells for his own research; the Geys wanted any cancer cells they could get. The day George Gey got his hands on Henrietta Lacks's cells, everything changed. For the Geys, for medicine, and eventually for the Lackses.
Henrietta Lacks's cells multiplied like nothing anyone had seen. They latched to the sides of test tubes, consumed the medium around them, and within days, the thin film of cells grew thicker and thicker. But Henrietta's tumor cells took over her body as quickly as they'd taken over test tubes. Within months, tumors appeared on almost every organ, and Henrietta moaned from her bed for the Lord to help her. The day she died, October 4, 1951, George Gey appeared on national television with a vial of Henrietta's cells. He called them HeLa cells, held them up to the camera, and said, "It is possible that, from a fundamental study such as this, we will be able to learn a way by which cancer can be completely wiped out." Gey introduced the nation to his hopes for curing cancer while Henrietta's body lay in the Hopkins morgue, her toenails shining with a fresh coat of red polish. And her family knew nothing of any cells.
As a train carrying Henrietta's casket rolled back toward Virginia, her cells shocked Gey with their strength. The local undertaker met Henrietta's body at the station where, less than a decade earlier, she had boarded her train to Baltimore. He buried her in an unmarked grave across the street from her family's tobacco field, behind the house where her mother was born. But in the Lacks family cemetery, where cattle roam freely when the season's right, folks today don't know much about HeLa. They don't know that soon after Henrietta's death in 1951, Gey and his colleagues used her cells to grow the polio virus that was ravaging children throughout the world. Henrietta Lacks rests today in an unmarked grave in the cemetery across the street from her family's tobacco farm in Virginia. "It was Henrietta Lacks's cells that embraced the polio virus," says Roland Pattillo, a former fellow of Gey's, who is now director of gynecologic oncology at Morehouse School of Medicine. "She made it possible to grow the virus so the vaccine could be developed." That was just the beginning. Gey and his colleagues went on to develop a test, using HeLa cells, to distinguish between the many polio strains, some of which had no effect on the human body. Until researchers knew which strain produced polio's crippling effects, they couldn't know what they were fighting. Through Henrietta's cells, they found their culprit. With this information, Jonas Salk and his colleagues in Pittsburgh created a vaccine, and the National Foundation for Infantile Paralysis established facilities for mass-producing the HeLa cells. They would use them to test the polio vaccine before its use in humans.
In the meantime, Gey shared his resources. Packaged in small tubes tucked in plastic foam containers, with careful instructions for feeding and handling, shipments of Henrietta's cells went out to Gey's colleagues around the world. . . to Minnesota, New York, Chile, Russia. . .the list goes on. Researchers welcomed the gifts, allowing HeLa to grow. They used the cells to search for a leukemia cure and the cause of cancer, to study viral growth, protein synthesis, genetic control mechanisms, and the unknown effects of drugs and radiation. And though Henrietta never traveled farther than from Virginia to Baltimore, her cells sat in nuclear test sites from America to Japan and multiplied in a space shuttle far above the Earth. Still, David Lacks and his children hadn't a clue. Henrietta's cells were, and still are, some of the strongest cells known to science--they reproduce an entire generation every 24 hours. This strength provided a research workhorse to irradiate, poison, and manipulate without inflicting harm.
"The [only thing] I heard about it was, she had that cancer," David Lacks says. "They called me, said come up there because she died. They asked me to let them take samples, and I decided not to let them do it." But the researchers told Lacks they could use his wife's cells to study cancer. Something that might strike his family again someday. Their studies might someday help his children and his grandchildren. Lacks was skeptical. But, he thought, if they want to see how my wife's cancer might affect our children, and get ready to treat them if they get sick, I guess that might be okay. "My cousins said it wouldn't hurt, so eventually I let them do it. The [doctors said] it was the fastest growing cancer they'd ever known, and they were supposed to tell me about it, to let me know, but I never did hear."
He didn't hear, that is, until a hazy day in 1975, 24 years after Henrietta's death, when his daughter-in-law went to a friend's house for dinner. In a two-story brown-brick townhouse in Baltimore, five doors down from her home, Barbara Lacks, the wife of Henrietta's eldest son, Lawrence, sat down for dinner at her friend Jasmine's house. The two women had been friends for years, but Barbara had never met Jasmine's sister or brother-in-law, who came all the way from D.C. for dinner. They gathered around the mahogany table, surrounded by plants and soft light, and Jackson, Jasmine's brother-in-law, looked across the table at Barbara. "You know," he said, "your name sounds so familiar." Jackson was a scientist who spent his days in a Washington laboratory. "I think I know what it is. . .I've been working with some cells in my lab; they're from a woman called Henrietta Lacks. Are you related?" "That's my mother-in-law," Barbara whispered, shaking her head. "She's been dead almost 25 years, what do you mean you're working with her cells?" Jackson explained. The cells, he told her, had been alive since Henrietta's death and were all around the world.
Actually, by that time, they were standard reference cells--few molecular scientists hadn't worked with them. Barbara excused herself, thanking him, promising she would be in touch, and ran home to tell her husband what she'd heard. Your mother's cells, she told him, they're alive. Lawrence called his father who called his brothers and his sister. They just couldn't understand. "The question I really had," says Barbara, "the question I kept asking Jackson was, I wonder why they never mentioned anything to the family. They knew how to contact us." But, since no one had called in the two decades after Henrietta's death, instead of continuing to wonder, the Lacks family got on the phone and rang Hopkins themselves. And they did it at an opportune time. Henrietta's cells, it turned out, had grown out of control. Some scientists thought her relatives were the only people who could help. Henrietta's cells were, and still are, some of the strongest cells known to science--they reproduce an entire generation every 24 hours. "If allowed to grow uninhibited," Howard Jones and his Hopkins colleagues said in 1971, "[HeLa cells] would have taken over the world by this time."
This strength provided a research workhorse to irradiate, poison, and manipulate without inflicting harm; but it also meant research labs were only big enough for one culture: HeLa. Though it took three decades for the Geys to succeed with their efforts to create a human cell line, after their success with HeLa, culturing cells became suspiciously easy. Researchers cultivated tissue samples from their own bodies and the bodies of their families and patients. Most grew successfully. Sure, the samples struggled during the first few weeks, or even months, in culture, but then, suddenly, they flourished. Samples blossomed into full-blown healthy cell lines with the strength of, well, the HeLa cell. In 1974, a researcher by the name of Walter Nelson-Rees started what everyone called a nasty rumor: HeLa cells, he claimed, had infiltrated the world's stock of cell cultures. No one wanted to believe him.
For almost three decades researchers had done complex experiments on what they thought were breast cells, prostate cells, or placental cells, and suddenly, rumor had it they'd been working with HeLa cells all along. To believe this would be to believe that years of work and millions of dollars had, in essence, been wasted. The truth was, Henrietta's cells had traveled through the air, on hands, or the tips of pipettes, overpowering any cell cultures they encountered. And researchers had no idea. There was no way to know which cells were growing in the petri dish. And there was no universally accepted test for a cell culture's identity. To accept or reject the theory that HeLa cells had taken over, researchers wanted more evidence. This required detailed information about the cells' source. But they knew only the barest facts about Henrietta: She was black, she was a woman, and she was dead.
Though it may have been coincidence, soon after the Lacks children called Hopkins asking about their mother's cells, letters appeared in their mailboxes. Several Hopkins researchers wondered, the letters said, if the Lacks family would be willing to donate some blood and tissue samples. Soon, a nurse circled Barbara Lacks's narrow dining room table with needles, blood tubes, and slides, gathering samples from the Lackses. From these donations, researchers would find precious bits of information about Henrietta--like her blood type--that they could use in their attempts to study her cells. "[It was] an elegant piece of work," Nelson-Rees told a reporter, "by simple Aristotelian class logic and pure applied genetics, you could speculate, to a remarkable extent, as to what Henrietta Lacks's [genetic makeup] was." And this is exactly what the researchers did. But if you ask the family, you'll get a different story. "The doctors tested us to see what was in my mother's system, was it hereditary," recalls Henrietta's son Sonny Lacks. "But that's all they said. They never got in contact with us again. We contacted them a couple a times, but they said they'd get back at us, then after a while, we just got tired of calling, so everybody just let it go and went back with their lives." But every now and then, they wonder if they have the gene that killed their mother.
This point of confusion between what the researchers intended to do with the samples and what the participants understood their intentions to be is only one of several elements of the Lackses' story that points to important ethical questions. Some have yet to find answers. "There are at least two issues that cases like Mrs. Lacks's raise," says Ruth Faden, executive director of the Johns Hopkins Bioethics Institute and the Philip Franklin Wagley Professor of Biomedical Ethics. "One is the question of consent, and the other is what, if anything, is morally or legally due to a person if something of commercial value is developed from their cells." In terms of informed consent, says Faden, "the Lackses' story is a sad commentary on how the biomedical research community thought about research in the 1950s. But it was not at all uncommon for physicians to conduct research on patients without their knowledge or consent. That doesn't make it right. It certainly wasn't right. It was also unfortunately common."
Since the era when Henrietta walked through the doors of Hopkins, the field of biomedical ethics was born, and with it came regulations about informed consent. Patients now have something like a legal promise that no physician will take samples without permission. It's the latter issue, the commodification of human body parts, which is still an extremely unsettled area of ethics and law in public policy. And for the Lackses, who don't all have health insurance or the money to afford it, the issue of commercial value in this case is very unsettled.
Unsettled, but with little recourse. Since the development of the HeLa cells, there's been an explosion of both scientific and commercial interest in the use of human tissues for research purposes, yet research subjects generally see none of the returns. "The amazing thing," says Faden, "is that here we are, almost 50 years later, the capacity to develop commercial products from human tissues is dramatically greater now than it was then, and we still haven't figured out how to handle it. . . . In terms of public policy, we're real clear that you can't buy and sell organs, that's illegal. But you can sell blood. You can sell human eggs and sperm. But you can't sell your kidney. And apparently, you can't sell your cells, you give those away. So, nothing is very clear, and there are a lot of deep worries about putting price tags on the human body."
This is partially why the United States has recently launched a Presidential Bioethics Advisory Commission to address this and related issues. To this day, members of the Lacks family feel they've been passed over in the story of the HeLa cells. They know their mother's cells started a medical revolution and are now bought and sold around the world. They're pretty sure that someone, somewhere, has profited from their mother's death. They know that someone wasn't related to Henrietta. And their experience is not well-known. In cases like these, Faden agrees, a good way to begin addressing this problem is through the telling of a story from which everyone can learn. This story starts with Henrietta and the origin of the HeLa cells: They were not from Helen Lane or Helen Larson, as many publications have mistakenly reported, they were from Henrietta Lacks, wife of David, mother of five.
Not long before his death, Walter Nelson-Rees, who devoted his career to containing the spread of HeLa cells, sat in a small chair in front of a television camera. He leaned forward, lifted his arms, and said, "HeLa will live forever, perhaps." And then he paused, staring wistfully ahead. "The dance of HeLa continues," he said, "they're all dancing out there somewhere... the stage is very broad and wide, and the curtain has by no means gone down on them. The music plays on." And somewhere, with freshly painted toenails and curlers in her hair, perhaps Henrietta dances with them.
Perhaps? | | Posted by -ice- at 12:29 AM - | |
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Wednesday December 13, 2006
After my meeting with the Vice President I decided to skip the rest of the day, and pick up some fast food on the way home; it had been a long day and tomorrow promised to be longer, since I was scheduled to meet with the Vice President’s Chief of Staff first thing in the morning.
“You’ll need to stop by and see Andy in the morning,” the VP had reminded me on my way out.
Andrew Ware was the VP's childhood friend, college roommate, and for the last 32 years, his closest confident, and he was also the one who had brought the Hiltie Group to the VP's attention. Where he'd got his information from was something I often wondered about. It had also been Ware who had talked me into leaving San Francisco for Washington five years previously. At first he had been my self-appointed mentor, which had dribbled over into his obtaining a fantastic lease-deal on an apartment for me. More than anything it had been the apartment thing and the subsequent meddling in other personal affairs of mine that had turned me away from him, although I was careful for it not to show.
Originally, back in those heady days, I thought I would eventually buy a house, but ‘eventually’ had not come yet, and I was still driving the 21 miles to and from the same apartment. But then again, I liked the distance between work and play, except when it snowed, which was in the forecast for later in the week, though the sun, fast dropping from the November sky didn’t foretell that.
Navigating the busy streets, as headlights from other cars were popping on, like eyes opening in a dark forest, I caught a reflection in the driver’s side window; it was of a tired, stressed out man, who looked to be about 40 which bothered me not in the least, mainly because, I couldn’t argue with the assessment, although my 32nd birthday was still 6 months away. I could tell he had a full head of hair, and though it appeared to be totally black, I knew where the gray was.
Reflecting on my reflection in the window caused my mind to jump to the VP, and when as I was trying to phrase how to tell him about her selection of reading material, that I’d detected an odd, unexplainable feeling concerning him. I was constantly telling myself to be careful what I told him, and though it was true that the girl read primarily about early 50’s culture, it was also true that she read extensively about today’s culture, which we knew puzzled the Hiltie Group, although many of us including myself, didn’t share their puzzlement. We thought it logical - giving what we suspected she was; the mystery to me was why? Why was it bothering them? Which brought me to the one thing that worried all of us the most – what we didn’t know?
Almost everything we knew about the Group came from information we’d garnered from employees, mostly low-level types in admin and security, some disgruntled and out for revenge, some swayed simply by a few bucks, and of course, the ones we deemed important enough that we forced to talk. However, the latest verification, Paul Johnson, was a bonanza in that he’d worked closely with research personnel, his specialty lying in electronic monitoring, and his motivation was purely of conviction. His verification had confirmed everything we already knew, as well as offering up the startling but not unexpected news that they were actually on the verge of naming her as the one. That she was in actuality not a twelve-year-old black girl by the name of Sissy, but, was Ella Mae Williamson, a black lady who had died in 1954, at the age of 42 leaving a husband and 4 children. A truly preposterous idea to me 5 years ago, until I’d read the “Hiltie Memo,” and became privy to information that had been verified time and time again. The “Hiltie Memo,” however, was the catalyst that was instrumental in converting not only Andrew Ware, but also the Vice President himself. James Hiltie, a lead researcher of what would as a result of his memo, become known to us as the Hiltie Group authored it. The day I read it, it was already 3 years old, and how, and exactly when we had acquired it, was then, and today, unknown to me.
Memo – James T. Hiltie, April 11, 2003
Shortly before her death in 1954 Ella Mae Williamson presented herself to Dr. David Dailey at the Jefferson Hospital, in Chicago, Illinois. She was pregnant with her 5th child, but the reason for her visit was a mysterious vagina bleeding that her family Doctor had deemed serious enough to refer her to his friend and colleague. Upon examining Ella, Dr. Dailey found a smooth eggplant-hued tumor glistening under the light on Ella’s cervix. He was shocked at its supple texture, and indeed it bled when touched, but very carefully he sectioned a small part of it for a diagnosis, and sent Ella home. “Malignant” was what he told Ella and her husband two weeks later when they returned, “don’t worry we will beat this thing,” was his words when they stared at him in questioning anticipation, but his silent thoughts were that nothing could be done.
Eight days later as was the custom of the day, physicians covered her cervix with radium in an attempt to kill the cancer. But before applying the treatment a young resident took one more sample. This one went to Dr. George Jennings, head of tissue culture research at Jefferson. Jennings had been searching for a tool for the study of cancer; a line of human cells that would live indefinitely outside the human body. After years of frustration in the laboratory, he’d turned his attention to cervical cells; the problem was obtaining them. With the help of Theodore Patterson, then head of Gynecology at Jefferson, who wanted cervical cells for his own research, he had obtained permission for a sample of Ella’s tumor. The day George Jennings got his hands on Ella Mae Williamson’s cells, everything changed. For Jennings and Patterson, for medicine, and eventually for the Williamsons.
Jennings was amazed at the cells; they multiplied like nothing anyone had ever seen. Latching themselves to the sides of test tubes they consumed the medium around them, and within days, the thin film of cells grew thicker and thicker, taking over the test tubes just as they were taking over Ella’s body, and within a few weeks Ella Mae Williamson, and her unborn child were dead, and for all purposes, forgotten, but not her cells.
Jennings called them “L- Cells,” and freely sharing his resources, they were carefully packaged in small tubes, and with instructions for feeding and handling, shipped to Jennings’s colleagues around the world. Researchers welcomed the gifts, allowing the L-Cells to grow. They used the cells to search for a leukemia cure and the cause of cancer, to study viral growth, protein synthesis, genetic control mechanisms, and the unknown effects of drugs and radiation.
The L-Cells were, and still are, some of the strongest cells known to science – producing an entire generation every 24 hours. “If allowed to grow uninhibited, George Jennings and his colleagues said in 1974, {L-Cells} would have taken over the world by this time.” This claim fascinated a scientist by the name of David Dunsmore, who working at the Dover Institute, in California, was trying to develop a new method of “nuclear transfer.”
Nuclear Transfer, the process of withdrawing the nucleus, which consists of the genetic makeup of an individual cell, and transferring it to another cell that had also had its nucleus removed, thus creating a new cell, had been around for several years at the time, but except for mild success with frogs, it had never proved useful for anything except for producing tadpoles that died as tadpoles, never progressing to frogs. Within a few years the world would hear about it (Nuclear Transfer) in conjunction with “cloning,” but Dr. Dunsmore was pursuing a different kind of cloning. He believed that the nucleus could be removed from cancer cells living outside the human body, and by employing different combinations of Nuclear Transfer involving chemically enhancing of the nucleus, he would be able to inject that nucleus into another cell, also free of its nucleus, which could then be grown in the lab and transferred to the womb of a woman. The end result would produce a fetus that would grow into a reproduction of the exact person from which the cells had come from. Whether or not this ‘reproduction’ would retain its original memories was unknown, but Dunsmore was convinced that it would.
For years Dunsmore had, along with other scientists believed that to produce a clone you needed ‘fast producing cells,’ but by the mid- 70’s most had given up on this idea, and were turning toward ‘quiescent’ cells, which were dormant cells; the new theory being that cells should not be fast dividing, but 'on the verge of dividing,' which was what quiescent cells were. Dunsmore, however, still believed in the original idea, thinking that all he needed was ‘super-fast, super-strong cells’, and, in “L-Cells” he was certain he had found exactly what he was looking for. Thus, he needed the L-Cells, but though they had been shared around the world, their inherent danger had caused the obtaining of them to be near impossible. He would need help, and for what he was trying to do, he would need plenty of money. For both he turned to a man he’d went to college with, the same man who had married his sister; Al Moore was at the time, CEO of ITA, one of the largest corporations in the country. Moore agreed to fund Dunsmore’s quest, and it was decided that although the study would be a subsidiary of ITA, it would operate under a false cover, supposedly studying the effects of generic engineering on sheep.
Thus our little Group was born, and now we stand on the edge of immortality, for, as you know Dr. Dunsmore was successful in his endeavors, just as those who have followed him have been successful in extending his victories to where we are today. Words cannot adequately describe where we are at this moment, for we are now almost certain, that we’ve reproduced a person who died almost a half-century ago. Although it has taken years to get here, we believe that within ten years, or perhaps sooner, we will know for sure.
So, continue the work, the future is ours. | | Posted by -ice- at 8:31 AM - | |
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Thursday December 7, 2006
Do they have her?
His question was brusque, spoken with the ease of someone used to being listened to, used to having his every word - paid attention to.
Politically, I wasn’t a fan of his at all, but I was betting everything I had on what just being next to him could bring me, and I would do or say anything to stay here, right next to him.
Yes sir, we are now saying that she is the one, the verification of Johnson makes 345, and as you know it’s the largest group of verifications we’ve been able to amass.
So, it’s the twelve-year-old girl, Sicily, or whatever?
“Sissy yes,” I said smiling inwardly at his show of not knowing a name.
“I always knew it was her, even when those pansy asses said it couldn’t be. How are we on the timeline? We should be doing more,” he said, his eyes boring into mine, as he said, “Let’s go over the story again, tell it to me again.”
Rapid fire questions to an aide was his way of looking into a mirror for confirmation or doubt, and wanting to go over again the story of what we knew was probably therapy for him - for all I knew, but my facial expression never wavered, as I thought of the VP a few years ago, demanding the project to be disbanded. Saying that the tracking of a major, unknown study conducted by a shadowy subsidiary of one of the largest corporations in America a true waste of taxpayer money. Then later, after he’d converted himself, and we’d verified the story 45 times in less than 6 weeks he’d howled that we were being lied to and that the idea that she was the one – was just not possible.
I slip into my dullest monotone, the way he likes to hear the story, and begin to recount what we knew that the Hiltie Group knew. “We know that since age 5 she’s been asking questions about everything, but especially the early 50's, and that she is good, never letting anyone in, just a little here and there, and maybe on purpose too.” I pause for a moment, thinking of how to phrase the next part.
The VP leans back, deep into the high back chair, and as he does, I experience an unsteady moment, as if something, somewhere deep, had moved in an unnatural way, like a wisp of knowledge about something I couldn’t quite understand. I take in the office, and it surprises me once again, the starkness and bareness of it, with just plain brown carpet on the floor, walls painted an eggshell white, and the government issued, gray metal desk that occupied half of the tiny office. A glass of water is always the only thing on the desk.
“So! Continue,” he says, snapping his fingers.
Smoothly, I cover my lapse by getting to the point.
“She reads primarily about the early 50’s culture, although they’re sure she’s been hiding a clear picture of that since the beginning, and what she allows them to see is only marginally more than the average 12 year old, but they’re worried about what they don’t know. They’re also worried about her computer, and the net; they’re worried she’s going nuts on it. They’re trying to monitor her usage but are unsure whether they have her contained or not, it’s a question they debate all the time, along with the one about whether or not she’s playing them.
“I can’t take that implication! Will not listen to it again!” Though his voice did not rise in volume or tempo, I feel the raw energy in his words, and in the way he brushes dust from the sleeve of his suit coat. Once again I realize I’m talking to a man just like me; one that would do anything to obtain something he desired. Anything.
“It’s a possibility, but I’m one of those who doubt it.” I tell him, but my statement hangs flat in the air, until he smiles, more to himself than to me, and says, “Yes it damn sure is, isn’t it?”
Though his comment is rhetorical I am unsure as to whether or not he’s waiting for a response from me, but proving that he wasn’t, he went on, “who’s running her besides the parents and girlfriend?”
“That’s it, and the girlfriend is the only one getting anywhere at all, they’re sure she’s onto the parents, but think they have her with the girlfriend.”
So Johnson’s veri, it tracked well?
Perfectly with the others.
“How many veries did you say we had now, 345?”
“Right,” I said, knowing that this question was rhetorical also; the man had an encyclopedic mind, and an unbelievable memory. He knew as well as anyone, the exact amount of verifications we had on the girl and that her story kept being verified with every turn. “Paul Johnson,” was just the latest employee of the Hiltie Group we’d managed to discover, and through methods I preferred to not know about, break all the way down and have him tell his story - about the Group’s quest to find her. Now, with this latest verification, we knew that the Group’s thinking was turning, slowly, but turning it was; turning in the direction of the little black girl in Chicago, and the rest of us were holding on, wondering, and waiting.
| | Posted by -ice- at 1:45 AM - | |
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