Course Hero is not sponsored or endorsed by any college or university. For the next several days, Deborah and I talked many times as we bothstruggled to make sense of the attacks, and Deborah tried to accept the idea thatthe conference had been canceled. Someconsent forms dont mention money at all; others come right out and say, Wemay give or sell the specimen and certain medical information about you.Others simply say, You will receive no reimbursement for donating tissue. Stillothers embrace confusion: Your sample will be owned by [the university]. They were well manicured and feminine, pinkyslightly raisedhands youd see in a commercial for nail polish, not wrappedaround the throat of a crying child. I just need some Benadryl.She bought a bottle that she kept in her purse and swigged from all day. Lucille Elsie Pleasant, daughter of Henrietta Lacks, the source of the HeLa cell line, lived the final years of her short life in the hospital, where she died at just 15 years old. You can HAVE IT! The loss of her mother probably sealed a horrific fate for Elsie, since the family then left her at the mercy of Crownsville doctors. While incarcerated, he went through drug and alcohol rehabilitation,got his GED, and taught GED classes to other inmates for twenty-five dollars amonth. I thought maybe I should read itfirst, so I could prepare her for whatever awful thing we were about to learn. Am I broken out? she yelled. 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. Lawrence andBobbettes granddaughter Erika had gotten into Penn State after writing anadmissions essay about how her great-grandmother Henriettas story hadinspired her to study science. And in a handful of cases, genetic tests performed on people withouttheir consent have been used to deny workers compensation or health insuranceclaims (something now protected against by the Genetic InformationNondiscrimination Act of 2008). 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. Tell me about her. My father always say she never went past a child in her head, she said,reaching into her purse for a crumpled copy of Elsies death certificate, whichshe began reading slowly out loud. Crownsville, Anne Arundel County, Maryland, USA. They're like having in-class notes for every discussion!, This is absolutely THE best teacher resource I have ever purchased. Skloot and Deborah know that this is not okay. 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. At one point shed decided she needed to get a safe deposit box for hermothers Bible and hair; later she asked if she needed to copyright Henriettassignature so no one would steal it. Patients arrived from a nearby institution packed in a train car. Standing on Main Street, staring at the corpse of Clovers downtown, it feltlike everything related to Henriettas history was vanishing. With the help of an author writing a book about Henrietta Lacks, Deborah found Lurz and asked for records on her sister, Elsie. Im pretty convinced that we should go the extramile to have a good and complex consent process, he told me. I wish they were here. Keeping his eyes on Deborah, Gary walked across the room, sat in anoversized recliner, and motioned for us to join him. Doctors, hospitals, and laboratories keepit. Detailed explanations, analysis, and citation info for every important quote on LitCharts. In the book, when Henrietta gets awfully The first 12 Crownsville patients are admitted to the hospital; originally they lived in an old farmhouse. Elsie Lacks ' family sent her to Crownsville (formerly known as the Hospital for the Negro Insane) after it became impossible to keep her safe and healthy at home. Change). They have nothing to lose. A fewhand out enough information to fill a small book, explaining exactly what will bedone with all patient tissues. . They could attempt to stop HeLaresearch through a lawsuit, arguing that its impossible to anonymize Henriettascells, which contain their DNA. After witnessing the amount of physical and emotional anguish that Deborah is in, Gary begins to, preach and lay hands on Deborah. She admits to Skloot that the picture of Elsie is really getting to her. We worrywhen theres nothing to worry about. In a moment of clarity, Deborah nodded, saying, And we bring our own bodydown by doing it. You dont seem so good right now, Cuz. Make a vibrant future possible for our nation's most important places. The way the content is organized. Deborah's talking nonsense and seems out of control. I cant get all thesethoughts outta my head. Sometimes learning can be justas painful as not knowing. Im ready, Deborah said, nodding. Their recordsif theyd survivedcould have filled Lurzs smallstorage room several times over. Not only that, but she wont see anybody she loves ever again. Today most Americans have their tissue on file somewhere. No it wont, Deborah said, climbing on all fours across the pile of papers,and sitting cross-legged in the center of the bed. On the screen, Deborah sat on a couch with her mothers Bibleopen in her lap, her hair brown instead of gray, her eyes bright, with no circlesbeneath them. 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. Hallelujah,amen. For the first time since Gary stood from his chair, he looked straight at me. Patients arrived from a nearby institution packed in a train car. This is three days before you were bornyourmoms pregnant with you here. What? JavaScript seems to be disabled in your browser. Decades later, the population declined to a measly 200 patients and, to save taxpayers the $12 million a year in upkeep, the hospital closed in 2004. Then her son Alfred called from prison, saying hed finally be going on trialright after the conference, and the charges now included armed robbery andattempted murder. 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. Just look at Henrietta. You believe Henrietta is in those cells? He smiled and looked down his nose at me like, silly child. 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. Everything will be all right. I cant do it aloneI thought I could.But I cant TAKE it, Lord. Mmmmmmm mmmmmmm mmmmmmm, Gary hummed. Their value for science comes from being part of alarger collection. During our last call, Id told her that thebook was done, and shed said she wanted me to come to Baltimore and read itto her, so I could talk her through the hard parts. That was the last time she would see her daughterEmmett figures she knew she was saying goodbye. The ledger that once documented which grave belonged to which patient has been lost or destroyed. Lurz opened to Elsies page, then quickly closed his eyes and pressed the bookto his chest before we could see anything. As a poor African-American female child, Elsie was among the most vulnerable and the least likely to receive fair treatment. That really made me feelokay about dying whenever my time come, shed told me. She dumped the bags contents on my bed just as sheddone the first night we met. When I get in my car and drive, dont have to be going nowhere, circles isfine by me. Tired, but alive. She quit after two years because her bodycouldnt take walking up and down stairs all day. 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). Remember? John Hopkins took my wifes mothers body and used what they needed, heyelled into the microphone. (LogOut/ For amoment I considered not showing it to Deborah. Youknow how to take care of me. Its not so much that I see it, but He sees it, Gary said, smiling. What physical ailments did Deborah suffer from as a result of the excitement and stress of seeing her. It looked like a hive. Then he startedshaking. Between 1910, when the hospital opened, and the late fifties, when the recordswere found to be contaminated, tens of thousands of patients passed throughCrownsville. Who paid for this room? Weve been through this! I said. Today, tissue-supply companies range from small private businesses to hugecorporations, like Ardais, which pays the Beth Israel Deaconess Medical Center,Duke University Medical Center, and many others an undisclosed amount ofmoney for exclusive access to tissues collected from their patients. Find answers and explanations to over 1.2 million textbook exercises. But, as Judith Greenburg of the NIH says,Its never possible to one-hundred-percent guarantee anonymity, because intheory we can now sequence genes and find out who anyone is from their cells.So the consent process has to be more about laying out the risks of tissueresearch so people can decide whether they want to participate. Ellen Wright Clayton, a physician and lawyer who is director of the Center forBiomedical Ethics and Society at Vanderbilt University, says there needs to be avery public conversation about all of this. They were warpedwith age, coated in dust, and filled with thick, yellowed paper. Heres my mother autopsy, shesaid at one point. All I can say is, we better deal with the problems now instead of waitinguntil that happens.There are, essentially, two issues to deal with: consent and money. [2] She cant do it! Then he raised his arms above Deborahs head andyelled, LORD, I KNOW you sent Miss Rebecca to help LIFT THE BURDENof them CELLS! He thrust his arms toward me, hands pointed at either side ofmy head. Teacher Editions with classroom activities for all 1699 titles we cover. It also alleviated the burden on almshouses which were less equipped to deal with the demands of the mentally insane and homeless. You have tobe prepared, he told Deborah, his voice gentle. Lucille Elsie Lacks was born to Henrietta and Day Lacks on November 12th, 1939. Eventually, Deborah grew quiet. My mother died nobody told me she was here. I dont believe my sister had all that. Lurz shook his head. Kathy Hudson, who has conducted focus groups about the publics feelings onthe tissue issue, says she believes that tissue rights have the potential to becomea bona fide movement. What happened to Elsie lacks? I never heard ofWWJD. She started yanking it off her neck. Even if you lose everybody like your mother and yoursister, Gods love will never turn His back on you. But Deborah didnt hear any of it. It was an inconceivable questionno one even knew what DNA was! For Korn, the consent issue is overshadowed by a public responsibility toscience: I think people are morally obligated to allow their bits and pieces to beused to advance knowledge to help others. You wouldnt believe what we been learning! she said. Rest little Elsie. Now this stack was all that was left atCrownsville. The picture of Elsie represents not only the abuse that she personally endured at the hands of doctors and nurses at Crownsville, but the thousands of black men, women and children who also suffered there; powerless people who were more or less tortured so researches could learn about the brain. She was institutionalized at Crownsville State hospital where she was severely abused. Its illegal to sell human organs and tissues for transplants or medicaltreatments, but its perfectly legal to give them away while charging fees forcollecting and processing them. Itwas one of nearly a dozen tapes the BBC had recorded that didnt make it intothe documentary. The Negro Incest Hospital in Crownsville closed in 2004 after a long battle with addiction. This is probably going to say some pretty upsettingthings. Sonny has cut off a lock of her hair to keep with Henriettas and, Would not have made it through AP Literature without the printable PDFs. And developers of the products that rely on human biological materialswould be out billions of dollars. Elsie Lacks medical records show that she suffered abuse, experimentation, and mistreatment. Just another reason I got to keep goin on and get to school, she told me. Dale wouldnt want that. Lurz plays a role in a best-selling book "The Immortal Life of Henrietta Lacks" by Rebecca Skloot. Ive never seen a picture in one ofthese reports, he whispered.He lowered the book so we all could see, and suddenly time seemed to stop.The three of us stood, our heads nearly touching over the page, as Deborah cried,Oh my baby! About an hour into the service, Deborah realized she couldntmove her arm. Butmaybe Ill come back as some HeLa cells like my mother, that way we can dogood together out there in the world. She paused and nodded again. 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. Deborah hoped this meant her brothers would find peace with her desirefor information about their mother. Andrewsand many others have argued that this makes scientists less likely to sharesamples and results, which slows research; they also worry that it interferes withhealth-care delivery. They even did that thing what do you call it um cloning! For a moment, as Deborahs face began to sag andher body slumped, Davon thought maybe shed accidentally taken her sleepingpill before coming to church. Elsie Lacks. Ill put some cream on it, she said. And whatyou plant is a bare seed not the full-bodied plant that will later grow up. Then it hit me. You type what you need for the book, butnot everything. . I dont like the way she got her neck. She held upthe picture and pointed to the white hands. She was the oldest daughter of David and Henrietta. But Blumberg says he doesnt think keepingpatients in the dark is the way to get that access: For somebody like Ted whoreally needed that money to survive, it would have been wrong to say scientistscould commercialize those antibodies, but he couldnt. Both actions were extremely stressful for her. Researchers havebecome entrepreneurs. Shepaced back and forth across the linoleum floor, picking the red polish off hernails and talking an incoherent stream about a murder shed heard about on thenews and the traffic in Atlanta. At that rate, it would cost anywhere from $46.4million (for academic institutions) to $464 million (for commercial labs) to testone person for all known genetic diseases. [1] Project Gado shares rare photos of Crownsville State Hospital, where Henrietta Lacks' daughter Elsie Lacks was a patient and died in 1955. projectgado.org. All this stuff Im learning,she said, it make me realize that I did have a mother, and all the tragedy shewent through. By the time they get to Annapolis to have a look at the records of Crownsville there, Skloot's worried. But Deborah didnt sit. (including. Then he started the engine so Pullum could justclimb in and start driving. Crownsville Hospital Center was founded in 1911 as the Hospital for the Negro Insane, a place to house African-American psychiatric patients separately from white patients in the other state hospitals.The first patients helped build the hospital's first buildings on land that previously was a farm. But she insisted I call her from theroad to tell her what she was missing. Imlooking forward to that. The younger Deborah said she was glad that when she died, she wouldnthave to tell her mother the story of everything that happened with the cells andthe family, because Henrietta already knew. For the best experience on our site, be sure to turn on Javascript in your browser. What new perspective did she gain after these experiences? I stood staring for a long moment, stunned andoverwhelmed, then said maybe we could sort through it together, then I couldfind somewhere to photocopy what Id need. We kept on like this for hours, me readingand taking notes, Deborah staring at Elsies picture in long silences broken onlyby her sparse commentary: My sister look scared. I dont like that look onher face. She was chokin herself? I guess after she realized she wasntgoing to see my mother no more, she just gave up. Occasionally she shook herhead hard, like she was trying to snap herself out of something. Deborah, meanwhile, worries that, Deborah needs a break. You always know what I need. The next morning when he called, she didnt answer. He died in 2001.Roland Pattillo is a professor at Morehouse School of Medicine, where hecontinues to hold his HeLa conference in Henriettas honor each year. 1. Summarize Garys spiritual explanation for why Henriettas cells lived on after her death. Her behavior continues to get more erratic as they drive to Clover. 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. Since tissues connected to theirdonors names are subject to strict regulation under the Common Rule, samplesare no longer named using donor initials as Henriettas cells were; today theyreusually identified by code numbers. We all just stood there, staring at those big white handswrapped around Elsies neck. Becausegoing to court is the only other option. And court is where these cases often endup, particularly when they involve money.When it comes to money, the question isnt whether human tissues and tissueresearch will be commercialized. I told the story of Henriettas cells and what theyd done forscience, my voice growing louder as the congregation yelled Amen! andHallelujah! and Lord have mercy! Most people think her name was Helen Lane, I said. 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. If that wasthe post office, where was everything else? Sure, he says,consent feels nice. Deborah pulled it down for her, saying, Whereeverybody at? Gladys said nothing. That pictures got her a little upset, I said. Washington, Lets get these things on thetable and come up with legal guidelines we can all live with, he says. Stuart McAlpine/Flickr/CC by 2.0. She pressed PLAY and a younger version of herself appeared on the screen. LitCharts Teacher Editions. There is, ofcourse, a physical body, so there has to be a spiritual body. HeLa? I asked Gary. Without those tissues, we would haveno tests for diseases like hepatitis and HIV; no vaccines for rabies, smallpox,measles; none of the promising new drugs for leukemia, breast cancer, coloncancer. 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! Discover the easy ways you can incorporate preservation into your everyday lifeand support a terrific cause as you go. Dont doctors have to tell you when they use your cells inresearch? Your sister was here? She nodded. Because pneumoencephalography couldcause permanent brain damage and paralysis, it was abandoned in the 1970s. I kept driving for a moment,thinking, Did they move the post office? One afternoon, in the midst of preparing for the conference, she called me tosay shed decided she wanted to go to school. I would have got her out.As we left Crownsville, Deborah thanked Lurz for the information, saying, Ivebeen waiting for this a long, long time, Doc. When he asked if she was okay,her eyes welled with tears and she said, Like Im always telling my brothers, ifyou gonna go into history, you cant do it with a hate attitude. Thenshe whispered, Oh my god. I dont like that either. I know you was hopin I didnt notice that, werent you? No. She came up with several ideas formaking money, including a colorful disposable baby bottle with premeasuredamounts of water and formulasomething a busy mom could shake with onehand while holding a baby. The cemetery, now protected as part of the Anne Arundel County Bacon Ridge Natural Area, is closed off to the public with the exception of the Scenic Rivers Land Trust's annual "Walk for the Woods.". Required fields are marked *. I was never able to getin touch with him to interview him for this book.Cliff Garret, Henriettas cousin, lived in his farmhouse in Clover until 2009,when his failing health required him to move in with his son in Richmond,Virginia, where he currently lives.HeLa is still one of the most commonly used cell lines in laboratories around theworld. Her left side was still weak, and she couldnt moveher arms well, but the doctors said she was lucky and would probably recovercompletely. We do know a few things about her. Lori Andrews, who has worked pro bono on all of the most importantbiological ownership cases to date, including the current breast cancer gene suit,says that many scientists have interfered with science in precisely the way courtsalways worried tissue donors might do. Maybe I can take a nutrition class to learn how to eatgood, too. The stroke seemed to ease tension in the family too: Deborahs brothers begancalling every day to see how she was doing, and Zakariyya even said he wantedto visit. Deborah gripped her cane andstared him in the eye with a look that just begged him to mess with her. In 2008, afterbeing released from prison, Cofield filed a seventy-five-page lawsuithis last todatethat a judge called incomprehensible. He sued 226 parties for more than$10 billion, and argued that past decisions in all his cases should be reversed inhis favor, and that anyone whod printed his name without permission should beincluded in his suit, because hed copyrighted his name. How can you tell that Elsies photograph and autopsy are deeply troubling to, 1 out of 1 people found this document helpful. 2001. Fill in your details below or click an icon to log in: You are commenting using your WordPress.com account. When shes not helping save places, youll find her reading, wandering around art museums, or hiking along the Potomac River with her dog. Elsie dies at age 15 in an asylum, under what Deborah and Rebecca . I told him I would walk through firealive before I would let him take my mother medical records. Elsie had developmental disabilities and was described by her family as "different" or "deaf and dumb". Protect the past by remembering the National Trust in your will or estate plan. As the conference approached, Deborah was calm, but I wasnt. Itwas sort of a generic word to describe someone who was slow, I said. She sat down next to me and pointed to a different word in her sisters autopsyreport. You wanted me to give it to you and I justdidnt want to, but you can have it now, Lord. Im having a reaction, swellin upand breakin out. 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. Ive been trying to find your phone number, he said, and my eyes filled withtears. The National Trusts federal tax identification number is 53-0210807. Scientists use these samples to develop everything from flu vaccines to penis-enlargement products. You'll be able to access your notes and highlights, make requests, and get updates on new titles. 57275518, citing Lacks Family Cemetery, Clover, Halifax County, Virginia, USA ; Maintained by Instead, she finds a photo of a battered Elsie, crying, with the hand of a white woman around her throat. In fact, just as one mouse or one fruit fly isntterribly useful for research, most individual cell lines and tissue samples arentworth anything on their own. During the 1950s, however, Crownsville was essentially a dumping ground for unwanted African Americansthe ill, the mentally impaired, and even criminals. When the films ended, Deborah jumped out of bed and put in yet anothervideo. Nominate your favorite spots for a Backing Historic Small Restaurants grant. Its not worth it you got to let the Lord handle it. His eyes droopedclosed as he mumbled, What is Deborah doing for Deborah? When she didnt answer he looked at me and said, I was talking to God justnowhes trying to make me say stuff, trying to make me move. Deborahcalled Gary The Disciple because he had a habit of channeling the Lord in themiddle of a conversation. Elsie wasn't like Henrietta's other children, because she was born with epilepsy, a mental condition that causes her brain not to process and function normally. 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. Butyou and Sonny and the rest of Henriettas children, they probably wont see realbenefits from them cells. Deborah nodded as Pullum raised his long robed armand pointed to JaBrea, a breathtakingly beautiful baby dressed in white lace witha bow in her hair. After transferring to the University of Maryland,she earned her bachelors degree and entered a masters program in psychology,becoming the first of Henriettas descendants to attend graduate school. At a gas station, while we waited in line forthe bathroom, she pulled a hammer from her backpack and said, I wish thefamily would give me the home-house so I can make it a historical place. For mostpeople, knowing if and how their tissues are being used in research is a farbigger issue than profiting from them. No one can say, She shouldnt be allowed to do that with her moneybecause that might not be most beneficial to society But replace the word moneyin that sentence with tissue, and youve got precisely the logic many people useto argue against giving donors any control over their tissues.Wayne Grody, director of the Diagnostic Molecular Pathology Laboratory atthe University of California, Los Angeles, was once a fierce opponent of consentfor tissue research. You can publish your book online for free in a few minutes. Thats a good one. Gary looked at me like, What the hell is goingon here? The store will not work correctly in the case when cookies are disabled. Death just following us and this story everywhere we go, shed say. It started about twenty years earlier, when he wasthirtyone minute he was busy with booze and women, the next hed hadseveral heart attacks and bypasses, and he woke up preaching. Baby JaBrea wavedher hands and let out a loud happy screech, and the congregation yelled amen.38 The Long Road to Clover On January 18, 2009, on a cold, sunny Sunday, I pulled off the highway ontothe road into Clover. 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. I dont wantnobody else to have them. Try our expert-verified textbook solutions with step-by-step explanations. So we kept going. Today, if doctors want to gather tissues from patients strictly for researchpurposesas in Henriettas casethey are required to get informed consent. (LogOut/ Lucille "Elsie" Lacks was Henrietta's second child - hit her head on the floor when she was less than one day old. When I got home from Clover, I called again saying, I broughtsomething back for you from Cloveryou wont believe whats happened downthere. But she didnt call back. Henrietta had a daughter named Lucille Elsie Lacks, but the family called her Elsie.
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