He slid the Bible from my hands and flipped to another passage, then handedit back, pointing at one sentence: Why do you who are here find it impossible tobelieve that God raises the dead? You catch my drift? he said, smiling a mischievous grin. Janice Hayes-Williams at a "Walk for the Woods" event. Butshe grabbed it from my hand and read the headline out loud, then looked up, hereyes dazed. Just another reason I got to keep goin on and get to school, she told me. Its changed the spirit. Now there are patents and proprietaryinformation where there once was free information flow. Scientists use these samples to develop everything from flu vaccines to penis-enlargement products. She let the coat fall onto both of our heads, thenput her arm tight around my shoulders. The Federal Policy for the Protection of Human Subjects, also known as theCommon Rule, requires informed consent for all human-subject research. Her behavior continues to get more erratic as they drive to Clover. Elsie dies at age 15 in an asylum, under what Deborah and Rebecca . This is nice, she said, pointing to a large illustration that showed a group ofmen in various states of despair, holding their heads, lying on the floor, orhuddling in corners. Patients ranged from the mentally ill to the homeless to children with epilepsy or syphilis whose parents could not deal with the demands of their illness, particularly during the Great Depression. Lawrence charged more than $6,000 to his credit cards to cover the costof her burial, and when this book went to press, Sonny was saving money to buyher a tombstone. Im going to sleep, she said, walking into the room next to mine. The day after seeing Henrietta's cells, Rebecca and Deborah set out to learn what had happened to Elsie Lacks. It also alleviated the burden on almshouses which were less equipped to deal with the demands of the mentally insane and homeless. But most just include a short line in an admissionform saying that any tissues removed may be used for education or research. thats right, they did that cloning on her. Gary and I shot each other a nervous glance and both started talking at once,scrambling to bring her back from wherever she was going. If you believe the Bible is the literal truth,the immortality of Henriettas cells makes perfect sense. Iwant to be there with my mother. Sitting between me and Davon on the bed, Deborah nodded at her youngerself on the screen and said, Heaven looks just like Clover, Virginia. Gladys had come from Clover by Greyhound as soon as she got word Henrietta was in the hospital. In1955, the year Elsie died, the population of Crownsville was at a record high ofmore than 2,700 patients, nearly eight hundred above maximum capacity. The more you hold them in, theworse you get. 5. Oh wow! I said suddenly. They alsohouse blood samples taken from most infants born in the United States since thelate sixties, when states started mandating the screening of all newborns forgenetic diseases. Each time she panicked, shed pat the bed and say,Wheres my sister autopsy report? or Oh no, whered I put my room key? Occasionally she stashed papers under the pillow, then pulled them out whenshe decided it was okay for me to see them. I keep thinkin, maybe if Iunderstood some science, then the story about my mother and sister wouldntscare me so much, she said. Letting people decide whats going to happen with theirtissue seems like the right thing to do. The Negro Incest Hospital in Crownsville closed in 2004 after a long battle with addiction. Unaccustomed to dealing with dead bodies, she focused her gaze away from Henriettas eyes. Though the judge in the John Moore case said patients must be told if theirtissues have commercial potential, there was no law enacted to enforce thatruling, so it remains only case law. Lets get busy, she said. He didnt think theyd have any from the fifties, but figured it wouldnthurt to look. A few minutes later she handed me a page she said was herfavorite because it had her mothers signature on itthe only piece ofHenriettas handwriting on record. Everybodyneeds something like that. If I ever get any money, Deborah said, Ill get an RV where I can go backand forth and I dont have to be in the same place ever. She called me laughing, saying, Girl, I got to get my rest so we can get backon the road and do more research before the trail get cold! All Rights Reserved. Elsie was institutionalized here for epilepsy until she died in 1955 at the age of 15. Lurz began reciting: I, Deborah Lacks Within moments she had an official medical record request on a torn piece ofpaper. She spends the time while Skloot is reading the medical records staring at and commenting on the photo and worrying over whether or not she lost the autopsy report. Myriad has been accused of creatinga monopoly, since no one else can offer the test, and researchers cant developcheaper tests or new therapies without getting permission from Myriad andpaying steep licensing fees. I thankthe Lord for what happened. The doctor told Deborah a second stroke was almost always worse than thefirst. Lift this burden, Lord, take it away, we dont NEED it! Deborah started convulsing in Garys arms, weeping and whispering, Thankya, Lord Thank ya, Lord. Gary squeezed his eyes tight, and yelled alongwith her, THANK YOU, LORD! Then her facefell, her jaw slack, and she whispered, I dont want you puttin that word in thebook. I wont, I said, and then I made a mistake. Why Was Elsie Lacks Sent To Crownsville? Below you will find a slide show of bonus photos related to The Immortal Life of Henrietta Lacks not included in the books photo insert. How are you going to distinguish, well, this patient said wecan study colon cancer; the next one said we can do anything we want, but wecant commercialize it. It was such a good idea we decided to stop here,she said, then hurried to the parking lot, climbed into her car, and rolled thewindow down. Merry Christmas In Estonian, There were more than a hundred pages, many of them crumpled, folded, ortorn, all of them out of order. The Devils been busy, girl, she told me. Pullum stood behind the pulpit wrappedin a long black robe with red crosses on its front, sweat beading his forehead. Summarize Garys spiritual explanation for why Henriettas cells lived on after her death. According to Judith Greenburg, director of the Division of Genetics andDevelopmental Biology at the National Institute of General Medical Science, theNIH now has very stringent guidelines requiring consent for any tissuescollected for their banks. Lawrence didnt think about thecells much anymore, though occasionally he and Zakariyya still entertained theidea of suing Hopkins. And for several years the publichas been sending samples by the millions to personalized DNA testingcompanies like 23andMe, which only provide customers with their personalmedical or genealogical information if they first sign a form granting permissionfor their samples to be stored for future research. Deborah reads that right away from the photo of Elsie. More on The Immortal Life of Henrietta Lacks, Zakariyya Bari Abdul Rahman (born Joe Lacks), Elsie Lacks (born Lucille Elsie Pleasant). Since its closure, the hospital has been the center of controversy concerning what to do with the extensive campus and its buildings. Im fine. Science is not the highest value in society, Andrews says, pointing insteadto things like autonomy and personal freedom. Elsie had a sever case of epilepsy, resulting in her stay at Crownsville. It wouldnt harm me if I died and yougave all my money to someone else. In fact, several patient groupshave created their own tissue banks so they can control the use of their tissuesand the patenting of discoveries related to them, and one woman became a patentholder on the disease gene discovered in her childrens tissues, which lets herdetermine what research is done on it and how its licensed. Lawrence Lacks, 82, the eldest son of the woman whose HeLa cells have been used in their billions since they were first taken from her in 1951, says HBO and Oprah tried to exploit her memory. She listed $732per month from Social Security Disability and $10 per month in food stamps.Her checking account was empty.When I went back to visit Clover and found Main Street razed, it had been afew months since Deborah and I talked. She moved across the room tothe other bed, where she lay on her stomach and started reading her sistersautopsy report. As she talked, her hand stroked the long lock of her mothers hair. You know, if someonewas going to make money off his antibodies, why shouldnt he have a say inthat? Many scientists Ive talked to about this issue agree. Deborah, he explains, recently had a stroke because of the stress of her mothers fame. Because whatshappening now is not what people think is going on. Lori Andrews, director of the Institute for Science, Law and Technology at theIllinois Institute of Technology, wants something more drastic: she has called forpeople to get policymakers attention by becoming conscientious objectors inthe DNA draft and refusing to give tissue samples. Just pretend like we cant seehim. Pullum waved his arms over his head, then pointed at the pulpit for me to joinhim. Only time I really relax is when Im drivin down here, she said. I started reading to myself andhe covered the Bible with his hand. And given the steady flow of court cases related totissues, the issue isnt going away anytime soon. I often visit her hair in the Bible, Deborah said into the camera. I called Deborah around eight in the morning, saying I was leaving my homein Pittsburgh, and headed to the conference in Washington, D.C. Less than anhour later, the first plane hit the World Trade Center. How can you tell that Elsies photograph and autopsy are deeply troubling to, 1 out of 1 people found this document helpful. So far, two courts have ruledagainst the patients, relying on the same logic used in the Moore case (thatgiving patients those rights would inhibit research, etc). Elsie Lacks (born Lucille Elsie Pleasant) was the second-born and eldest daughter of Henrietta Lacks, who was the source of the famous HeLa cell line. When this book went to press in 2009, more than 60,000 scientificarticles had been published about research done on HeLa, and that number wasincreasing steadily at a rate of more than 300 papers each month. More on The Immortal Life of Henrietta Lacks, Zakariyya Bari Abdul Rahman (born Joe Lacks), Elsie Lacks (born Lucille Elsie Pleasant). No one is sure why patients were buried anonymously. You knowthat. Deborah stopped fussing with the keys and collapsed back into the chair. Next it was Day, who died of a stroke, surrounded by his family.Then Cootie, who killed himself with a shotgun to the head. I dont want to cause problems for science, Sonny told meas this book went to press. Learn about the short and tragic life of Elsie Lacks, Crownsville and its atrocities, and how the records were found. Now Imgonna have Sister Rebecca Skloot come and talk about what she doing with mywife and them cells. Id never sat in a congregation before, let alone spoken in front of one. It used to be, someresearcher in Florida had sixty samples in his freezer, then another guy in Utahhad some in his, says Kathy Hudson, a molecular biologist who founded theGenetics and Public Policy Center at Johns Hopkins University and is now chiefof staff at NIH. It looked like a hive. Create a free website or blog at WordPress.com. Change), You are commenting using your Twitter account. To get Henrietta Lacks story. I walked to the pulpit and took the microphone from Pullum, whopatted me on the back and whispered in my ear, Just preach it in your ownwords. So I did. She lay on her side and curled herself aroundthe Crownsville picture of Elsie for so long, I thought shed fallen asleep. Definitions and examples of 136 literary terms and devices. . (See p. 282) She spends the time while Skloot is reading the medical records staring at and commenting on the photo and worrying over whether or not she lost the autopsy report. Velankanni Church Prayer, Explore this remarkable collection of historic sites online. So Im just gonna do it. Within days, shed calledseveral local community centers and found one that offered adult educationclasses, and signed up to take math and reading placement tests. PART TWO: DEATH Chapter 12: The Storm For a discussion of the history of court decisions and rights regarding, However, in October 2009, as this book went to press, portions of Henrietta's medical records were again published without her family's permission, this time in a paper coauthored by Brendan Lucey, of Michael O'Callaghan Federal Hospital at Nellis Air Force Base; Walter A. Nelson-Rees, the HeLa contamination crusader who died two years before the article's publication; and Grover Hutchins, the director of, The authors had obtained IRB approval to publish a series of articles using. In other words, he was informed, and hegave consent. Sir Lord Keenan Kester Cofields whereabouts are unknown. And Oklahoma! But theMoore decision backfiredit just handed that commercial value to researchers.According to Andrews and a dissenting California Supreme Court judge, theruling didnt prevent commercialization; it just took patients out of the equationand emboldened scientists to commodify tissues in increasing numbers. He imagines patientsmight be less likely to donate now: They probably want to maximize theircommercial possibilities just like everyone else. All the important science Blumberg has done over the years depended on freeand unlimited access to tissues. Credit cards? Built on a 556-acre farm, the hospital was a self-sustaining institution in which many patients helped build the many structures that comprised the campus, tended the crops, milked the cows, and harvested willow wood to make furniture and baskets. If youre not lying, why did you smile? She started frantically stuffing papers into her canvas bags as I tried to explainmyself and talk her down. The idea that God chose Henrietta as anangel who would be reborn as immortal cells made a lot more sense to them thanthe explanation Deborah had read years earlier in Victor McKusicks geneticsbook, with its clinical talk of HeLas atypical histology and unusuallymalignant behavior. It used phrases like the tumors singularity and called thecells a reservoir of morphologic, biochemical, and other information. Jesus told his followers, I give them eternal life, and they shall never die.Plain, simple, to the point. But theres something psychologicallybeneficial to me as a living person to know I can give my money to whoever Iwant. Everything else is red: her fingernails, the welts on her face, thedirt beneath her feet. Its aboutallowing people to express their desires. Clayton agrees, but says, Thefundamental problem here isnt the money; its the notion that the people thesetissues come from dont matter. After the Moore case, Congress held hearings and commissioned reports thatuncovered the millions of dollars being made from human tissue research, and itformed a special committee to assess the situation and recommend how toproceed. Their image of a beautiful girl loved by her mother is shattered. Learn more about Lacks in this article. Dont you want a break? No way! she yelled. I want people in our family to be the only ones who have allthem records. After I promised I wouldnt copy all the records, Deborah said she was goingto bed again, but for the next several hours, she knocked on my door everyfifteen or twenty minutes. But it used tobe across the street from the rest of downtown. You need to tell us whats goin on. Then he looked at Deborah. People was always tryin to keep them down and stop them from doing whatthey want just like people always doin with me and the story about my mother,she said. Genealogy profile for Elsie Elise Lacks Elsie Elise Lacks (1939 - 1955) - Genealogy Genealogy for Elsie Elise Lacks (1939 - 1955) family tree on Geni, with over 200 million profiles of ancestors and living relatives. Then,suddenly, she grinned and reached up to smooth my hair, saying, I never seenyou mad before. Genealogy profile for Elsie Elise Lacks Genealogy for Elsie Elise Lacks (1939 - 1955) family tree on Geni, with over 230 million profiles of ancestors and living relatives. I cant carry it no more, Lord. That fluid protects the brain fromdamage, but makes it very difficult to X-ray, since images taken through fluidare cloudy. She was the oldest daughter of David and Henrietta. Refine any search. memorial page for Lucile Elsie Lacks (12 Nov 1939-24 Feb 1955), Find a Grave Memorial ID 57275518, citing Lacks Family Cemetery, Clover . Books: the best way to start a new year. She admits to Skloot that the picture of Elsie is really getting to her. The ledger that once documented which grave belonged to which patient has been lost or destroyed. Hed been walking toward Cooties car, carrying his best suit to putin the trunk so it wouldnt get wrinkled on the way to Cooties mothers funeral.A few months later, Deborah called to say that Cliffs brother Fred had died fromthroat cancer. Sure, he says,consent feels nice. Itwas sort of a generic word to describe someone who was slow, I said. He asks Deborah to tell him about, Along with the picture, the group also finds, was rampant, and scientists often conducted experiments on inmates without consent. You cant ignore this issue of who gets the money and what the money isused for, says Clayton. Pretty soon youre gonna find yourselfconverted. I doubt it, I told him, and we both laughed. With levels like hers, he said, she could still have oneany minute. She handed it to Lurz and told him, I need a good blowed-up copy of thatpicture, too. Before Lurz left to make photocopies, with the bald man close behind, hehanded me a stack of photos and documents to look at while he was gone. Instead of cleaning each page of therecords to save them, the administration decided to have them carted away inbags and buried. He walked to a storage closet near his desk, its walls lined with shelves andfile cabinets. But Id get fired if I was still doinnails for a living. We walked down to the lobby for our free breakfast. Each time someonedied, Deborah called crying. I later learned that while Elsie was at Crownsville, scientists often conductedresearch on patients there without consent, including one study titledPneumoencephalographic and skull X-ray studies in 100 epileptics.Pneumoencephalography was a technique developed in 1919 for taking imagesof the brain, which floats in a sea of fluid. Nominate your favorite spots for a Backing Historic Small Restaurants grant. But you can haveeternal life. As medical records show, Mrs. 2. For mostpeople, knowing if and how their tissues are being used in research is a farbigger issue than profiting from them. What did you say her full name was? Lurz asked, running his finger down alist of names written in careful script next to page numbers. That was the Lord talking to you. Well, hallelujah, Deborah said, giggling. Iwalked into the bathroom, where she stood pointing to a quarter-sized welt onher forehead. And we visited the home-house, whereDeborah said, I want you to take a picture of me here with my sister. She stood in front of the house, turned both photos of Elsie so they faced me,and held them to her chest. And she couldnt never learnhow to use the toilet. Myface flushed and my throat clenched as Deborah pushed my back to get memoving. Rebecca implies that her difficulties may have been caused by syphilis that Day passed on to his wife and unborn child. You have tobe prepared, he told Deborah, his voice gentle. Ijust hope its nice and calm. She had five children, and one of them is sitting right over there. Ipointed at Deborah. Now it's a multipurpose building. Couldn't speak or hear. Teachers and parents! When the doctors finally let Deborahs family see her, Davon, Pullum, andDeborahs daughter, Tonya, filed in to find Deborah sitting propped up in bed,eyes wide. Local historian Paul Lurz, who came to the hospital in 1964 as a student social worker, says that the use of mentally ill patients for testing new treatments and therapies was not unusual: "There was a whole rationale about it that they (the patients) could pay back the institution for their stay. Remember? You dont have to be fearful, Gary said. Died with epilepsy at 15 Lacks began undergoing radium treatments for her cervical cancer. Both lidswere swollen and shining like shed covered them in blood-red shadow. And at this point no case law has fully clarified whetheryou own or have the right to control your tissues. Sometimes I wonder, if somebody taught her sign language,maybe shed still be alive. Lurz sat in his chair, legs crossed, looking at the photo of Elsie. What reason does Deborah give for not wanting Skloot to type out Henriettas records word-for-word? What new perspective did she gain after these experiences? Youre lying! she yelled again. This isnt about trying toget patients a cut of the financial action, says Lori Andrews. Who paid for this room? Weve been through this! I said. That really made me feelokay about dying whenever my time come, shed told me. Welcome, into this broken vessel. His singing,quiet at first, grew louder with each word until it filled the house and poured intothe tobacco fields. Four years later, she gives birth to, Chapter 5: Blackness Be Spreadin All Inside, The author turns her attention to Henriettasoldest daughter, the mentally impaired, in Baltimore, and that Day is still alive at eighty-four. They argue that researchon those samples is an invasion of their childrens privacy. In 2005, members of the Native American Havasupai Tribe sued ArizonaState University after scientists took tissue samples the tribe donated for diabetesresearch and used them without consent to study schizophrenia and inbreeding.Their case is still pending. The first time she reeked of peaches and said, I justhad to go to my car for my lotion so I thought Id say hi. Each time it wassomething else: I forgot my nail file in the car! X-Files is on! Imsuddenly thinking about pancakes! Each time she knocked, I opened my doorwide so she could see the room and the medical records looking just as they hadwhen she left. Theyre here to look at thepatients medical records.The man paused, looking at Deborah, then at me: a short black woman in herfifties, and a taller white woman in her twenties. Gary squeezed his eyes tight, and how their tissues are being in... 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