being evacuated, including the Ronald Reagan Building, where theconference reception to honor Henrietta was supposed to be held. 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. 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. Do something to relax yourself. I cant help it, Deborah said, waving him off with her hand. "I am attempting to save black history. Look here, I said, pointing at the page.Her cervix is two centimeters dilated Shes getting ready to have you. Deborah bounced on the bed, clapped her hands, and grabbed another pagefrom the medical records.Read this one! The date was February 6, 1951. Today the decision to disclose thisinformation is up to the institution, and many choose not to tell patients. Between 1910, when the hospital opened, and the late fifties, when the recordswere found to be contaminated, tens of thousands of patients passed throughCrownsville. And some enforce their patentsaggressively: Myriad Genetics, which holds the patents on the BRCA1 andBRCA2 genes responsible for most cases of hereditary breast and ovariancancer, charges $3,000 to test for the genes. Deborah gripped her cane andstared him in the eye with a look that just begged him to mess with her. You need to tell us whats goin on. Then he looked at Deborah. That you said in your word Lord, that the BELIEVER would lay hands onthe sick, and that they shall RECOVER! His voice rose and fell, from a whisperto a yell and back. You cant ignore this issue of who gets the money and what the money isused for, says Clayton. A fewhand out enough information to fill a small book, explaining exactly what will bedone with all patient tissues. She sat in the front pew in a reddress suit, hands folded in her lap, listening to her husband preach aboutSeptember 11. 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. Thats a bad shot, Deborah said. What she dint know was that no one would ever visit Elsie again., This makes me want to cry. The state of being empty. Just as Lurz read the phrase vomiting coffee-ground material out loud, ashort, round, balding man in a dark business suit stormed into the room tellingme to stop taking notes and demanding to know what we were doing there. The National Trust for Historic Preservation is a private 501(c)(3) nonprofit organization. Established in 1911 as the Hospital for the Negro Insane, the hospital was a place to treat and house African-American patients separate from white patients. Godprovides that seed with the body he wishes; he gives each seed its own properbody. Henrietta was chosen, Gary whispered. 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. Because of patent licensing fees, it costs $25,000 for anacademic institution to license the gene for researching a common blooddisorder, hereditary haemochromatosis, and up to $250,000 to license the samegene for commercial testing. I stayedbehind in Clover because I wanted to talk to Gary about the night before. Everyone said that's why her mind was left like an infant. Beautiful andotherworldlyglowing green and moving like water, calm and ethereal, lookingprecisely like heavenly bodies might look. Lawrence didnt think about thecells much anymore, though occasionally he and Zakariyya still entertained theidea of suing Hopkins. Together, we can protect irreplaceable sites that illuminate the full American story. Out loud, he said.So I read aloud from the Bible, for the first time in my life: Those whobelieve in me will live, even though they die; and those who live and believe inme will never die. Gary flipped to another passage for me to read: Someone will ask, How canthe dead be raised to life? Tell lawmakers and decision makers that our nation's historic places matter. 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. Henrietta's death was an enormous tragedy for Elsie Lacks, because Henrietta was the only one who visited her and tried to take care of her. 1. Dont you want a break? No way! she yelled. Ive been trying to find your phone number, he said, and my eyes filled withtears. And there were scientific experiments done on the inmates there without the consent of the family. 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. 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. What new perspective did she gain after these experiences? We all just wanted to forget about it, like if we ignored it, maybe it wouldjust go away. But it didnt. Ethereal. The file reveals that she probably died of internal bleeding, from self-induced vomiting. In one hand she clutched the Crownsville picture of Elsie; with the other she grabbed the bag filled with her mother's medical records off the dresser where I'd put it. 600 14th Street NW She was the oldest daughter in the family. 1. Pretty soon youre gonna find yourselfconverted. I doubt it, I told him, and we both laughed. While incarcerated, he went through drug and alcohol rehabilitation,got his GED, and taught GED classes to other inmates for twenty-five dollars amonth. She handed them to the man, who grabbed the autopsy report book and startedreading. I decided Im not going to bed, she said matter-of-factly. Nearly all of the patients admitted died while still at the hospital, including Henrietta Lacks' eldest daughter Elsie and Pauli Murray's father . I thought maybe I should read itfirst, so I could prepare her for whatever awful thing we were about to learn. And the scale of tissue research is only getting bigger. Take a look at all the ways we're growing the field to save places. Istood with my hand over my mouth, staring in disbelief at the empty field until Irealized there were splinters of brick and small white plaster tiles pressed intothe dirt and grass. A lot of people dont believe that. I just hope Hopkins and some of theother folks who benefited off her cells will do something to honor her and makeright with the family., The words you are searching are inside this book. Ijust hope its nice and calm. I was very angry with Sister Rebecca when she started calling us, he said.So was my wife. His case resulted in a congressional investigation andlater a hearing; the possible interests of the patients, and their lack of knowledgeof the value of their samples, wasnt mentioned at any point in the process. The doctor told her she needed to avoid stress completely, so we decided sheshould stop coming on research trips with me. Copyright 2021 Intralog. Gary jumped off the chair, laughing and raising his eyebrows at me. Ill put some cream on it, she said. So I dialed Sonnys number to say something Id said to him manytimes over the years: Will you tell your sister to stop messing around and returnmy calls? But I tell you one thing, I dont want to be immortalif it mean living forever, cause then everybody else just die and get old in frontof you while you stay the same, and thats just sad. Then she smiled. Shed never told me something was off limits for the book, and this was aword I would never have includedto me, it didnt seem relevant. 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. Honor the invaluable contributions of women by saving the historic places that tell their stories. Merry Christmas In Estonian, God willing, I can be with her someday. document.getElementById( "ak_js_1" ).setAttribute( "value", ( new Date() ).getTime() ); Today is this wonderful woman's birthday, and we should take the time to acknowledge her. 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. 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. He was trying to take one of the only things I really got from mymother. She pointed at my laptop on the bed and said, I dont want you typin everyword of it into your computer either. Complete your free account to access notes and highlights. It says even if our father and our mother fall sick,the Lord take care of you. It was the middle ofthe night and I still had a big pile of paper to sort through. She doesnt want her head like that, Deborah whispered. She tried to straighten her gown to cover herself when we walked in, but herhands couldnt grasp it. They need to take hold of it and let it teach themthey can change the world too. He raised his arms above his head and yelled hallelujah. (LogOut/ Deborah hoped this meant her brothers would find peace with her desirefor information about their mother. They sit in lab freezers, onshelves, or in industrial vats of liquid nitrogen. Just another reason I got to keep goin on and get to school, she told me. Her hair, which Henrietta once spent hours combing andbraiding, is frizzy, with thick mats that stop just below the five-foot mark behindher. This number, the report said, was increasing by more than 20 millionsamples each year. Butshe grabbed it from my hand and read the headline out loud, then looked up, hereyes dazed. Its changed the spirit. Now there are patents and proprietaryinformation where there once was free information flow. Now this stack was all that was left atCrownsville. In 1999, President Clintons National Bioethics Advisory Commission(NBAC) issued a report saying that federal oversight of tissue research wasinadequate and ambiguous. It recommended specific changes that wouldensure patients rights to control how their tissues were used. Elsie Elise Lacks: Birthdate: 1939: Birthplace: Halifax, Halifax . I know youdont like to think about it, but thats the Lord telling you something. He said it was a hymn, then ran from the living room and came back carryinga soft blue Bible with large gold lettering across its front. - NCERT POINT. Everything else is red: her fingernails, the welts on her face, thedirt beneath her feet. Still, that often involves someone taking part of you. I love them boys, but Im notgonna let nobody upset me right now. The next morning was September 11, 2001. 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 ran her finger across Elsies face in the Crownsville photo. Spent five years in Crownsville StateHospital. She handed Lurz the picture of her sister that Zakariyya had hangingon his wall. That was the thinking.". The next morning when he called, she didnt answer. Once theyre excised, your rights get murky. How can you tell that Elsies photograph and autopsy are deeply troubling to Deborah? 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. As of 2005the most recent year figures were availablethe U.S.government had issued patents relating to the use of about 20 percent of knownhuman genes, including genes for Alzheimers, asthma, colon cancer, and, mostfamously, breast cancer. Some patients weren't even mentally ill, and scores who died at the hospital were . I want to look atthat stuff with you. She was jittery and twitchy, like shed just had several shotsof espresso. Pullum told the congregation to give me a hand, and the room eruptedin cheers. We can just read it allhere and you can take notes. That would take days, I said. But Deborah didnt sit. Lucille Elsie Pleasant Character Analysis. Scientists whove gone ahead with researchinvolving the breast-cancer genes without Myriads permission have foundthemselves on the receiving end of cease-and-desist letters and threats oflitigation. When they had beds, they usually slepttwo or more on a twin mattress, lying head to foot, forced to crawl across a seaof sleeping bodies to reach their beds. I understand why, he whispered.Plus she just saw her mothers cells for the first time, I told him. What happened to Elsie in Henrietta Lacks daughter? Pneumoencephalography involved drilling holes into the skulls ofresearch subjects, draining the fluid surrounding their brains, and pumping air orhelium into the skull in place of the fluid to allow crisp X-rays of the brainthrough the skull. Sure, he says,consent feels nice. A group of people who assemble for religious worship. Id been watching all this from a recliner a few feet away, dumbfounded,terrified to move or make noise, frantically scribbling notes. But Deborah didnt notice.She just smiled and laughed, saying, Im so happy our reportin is going sogood! As the day went on, the story behind the picture grew more elaborate. Id like to have this for my wall. She handed it back to meand asked me to read it out loud. Gary stared into my eyes as he hugged Deborahs sobbing body andwhispered to her, Youre not alone. Looking at me, Gary said, She cant handle the burden of these cells nomore, Lord! I knowyoull have to look at every page, take notes and everything, cause you need allthe facts. And finally, when we checked into a hotel somewhere betweenAnnapolis and Clover around nine oclock at night, she gave them to me. 2023 Shmoop University Inc | All Rights Reserved | Privacy | Legal. It was my birthday, and wed planned to meet in Clover that day. Pattilloand his wife, Pat, plan to buy a marker for Henriettas grave, to be placed nearher mothers tombstone in the Lacks family cemetery.James Pullum, Deborahs ex-husband, is still preaching in Baltimore.Courtney Speed still runs her grocery store, where she continues to teach localchildren to do math, and hopes to open a Henrietta Lacks Museum.Afterword When I tell people the story of Henrietta Lacks and her cells, their firstquestion is usually Wasnt it illegal for doctors to take Henriettas cells withouther knowledge? Deborah grabbed her longblack raincoat, opened it wide, and raised it above her like an umbrella, noddingfor me to come under with her. 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. She reads her mothers records, and learns that, last Deborah calls Rebecca: she demands that Rebecca get Henriettas name right, that she mention, Rebecca describes Zakariyyas tiny apartment, in which hes hung pictures of Henrietta and, Chapter 33: The Hospital for the Negro Insane, Rebecca explains that she has promised to help Deborah find out what happened to, improvement, but also has a passion for history. Garys eyes followed her from one side of theroom to the other, intense and unblinking. Shed changed into anenormous white T-shirt that hung past her kneeson it was a picture of a stick-figure woman taking cookies out of an oven, and the word GRANDMA in bigchildlike print. 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. Elsie Lacks medical records show that she suffered abuse, experimentation, and mistreatment. But little happened. Amen! It had been drizzling outside for hours, but suddenly rain pounded the tin roofand turned to hail so loud that it sounded like applause. Every researcher Ive mentioned that ideato shudders at the thought of it. 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. Rebecca Skloot, would you stand for us this morning? Deborah whispered, Uh-oh, as the entire congregation followed his pointingfinger to look at me. 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. I cant do it aloneI thought I could.But I cant TAKE it, Lord. Mmmmmmm mmmmmmm mmmmmmm, Gary hummed. Im sorry I cant comecelebrate with you down in the country, but I had me a couple strokes the otherday. There were more than a hundred pages, many of them crumpled, folded, ortorn, all of them out of order. You wouldnt believe what we been learning! she said. 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. My motherand I always loved it down there more than anywhere else in the world. She stroked Davons hair. But from now on, Iride with you. PDF downloads of all 1699 LitCharts literature guides, and of every new one we publish. No! Deborah yelled, then smiled a nervous smile. No one ever came to visit her again, and patients without family are always the most vulnerable. Discover historic places across the nation and close to home. Then it hit me. She was the oldest daughter of David and Henrietta. Washington, I think I did it after I took my pill. Her nails and much of the skin around them were bright fire-engine red.From a distance it looks okay, she said. I cant carry it no more, Lord. I pulled up an armchair, opened my laptop, and started sorting. In the back corner hed crammed a small desk, facing the wall.Lurz had been working at Crownsville since 1964, when he was a student internin his twenties, and he had a habit of collecting potentially historic documents:patient records, copies of old admissions reports that caught his attentionaninfant admitted blind in one eye with facial deformities and no family, a childinstitutionalized without any apparent psychiatric disorder. She jumped off the bed and stood over me,pointing a finger in my face. I called Deborah, and she answered in a panic. Im comin back tomorrow forsome more of this! After Henrietta passed away, Elsie was alone, and she passed away not long after Henrietta passed away. I keep thinkin, maybe if Iunderstood some science, then the story about my mother and sister wouldntscare me so much, she said. And a great big picture of her, and maybe one ofthem wax statues. Davon screamed, Grandpop!Grandpop! Pullum took one look at Deborah and yelled, Stroke! The second Davon heard the word stroke, he grabbed Deborahs pocketbook,dug out her car keys, and ran to the car. Pullum rolled his eyes, then yelled into the microphone, We have aguest with us today! Sonny woke up more than$125,000 in debt because he didnt have health insurance to cover the surgery. No one wants to see the memory of Crownsville State Hospital disappear, particularly Lurz and fellow historian Janice Hayes-Williams who continue to work endlessly to uncover the history of the hospital and those buried in the cemetery. 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 its also brought problems, like secrecy and arguments over whoowns what. Slavin and Blumberg never used consent forms or ownership-transferagreements; Slavin just held up his arm and gave samples. The dilapidated interior of the hospital reflects the ravages of the years since its closure. gov. They nolonger talk about suing Johns Hopkins, though Lawrence and Zakariyya stillbelieve theyre owed a share of the profits from HeLa cells.Christoph Lengauer is Global Head of Oncology Drug Discovery atsanofiaventis, one of the biggest pharmaceutical companies in the world. 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. I askedagain and again if she was okay and said maybe we should stop somewhere soshe could see a doctor. Sonny told them to stay out of it,saying, All she doin now is goin places to speak and learnyall dont want todo that, so just leave her alone. But Lawrence insisted Deborah give him therecords shed gathered on their mother. We all just stood there, staring at those big white handswrapped around Elsies neck. Holy cuss! she yelled, is it rainingout there? Much needed rain, Gary whispered, rocking back and forth. I should probably take my sleepingpill. She went back to her room and a moment later the volume on her TV wentup. Shes suffered a lot inlife, and now shes happy. After finding Deborah in her bed, Sonny cut a lock of her hair and tucked itinside their mothers Bible with the locks of hair from Henrietta and Elsie.Shes with them now, he told me. This is a capitalistsociety, says Wayne Grody People like Ted Slavin took advantage of that. Youknow how to take care of me. Its not so much that I see it, but He sees it, Gary said, smiling. As I passed one green field after the next, I thought, I dontremember the road into Clover being so long. When shes not helping save places, youll find her reading, wandering around art museums, or hiking along the Potomac River with her dog. They were warpedwith age, coated in dust, and filled with thick, yellowed paper. You might think about getting yourself another copy of your mothersmedical record and stapling it with all the pages in order to keep it all straight, Isaid. Mostrecently, he served several years in prison for trying to buy jewelry at Macyswith a stolen check, and filed several lawsuits while incarcerated. 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. Its just like Pearl Harbor allover again, she said. And when the Lord chooses anangel to do his work, you never know what they going to come back lookinglike. Gary pointed at another passage and told me to keep reading. Hes put food on my table Gary dropped his voice, humming as Deborahspoke: Show me which way to go, Lord, she said. Thenshe whispered, Oh my god. Then she knelt on the ground, next to the sunken strips ofearth where she imagined her mother and sister were buried. 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. Not only that, but she wont see anybody she loves ever again. Notify me of follow-up comments by email. Please sit. Deborah raced over to a rocking chair not far from Gary, threw herself into it,and started rocking violently, thrusting her upper body back and forth andkicking her feet like she was trying to flip the chair over. The appearance of this picture in textbooks about genetics and on the cover of Skloot's book emphasizes the humanity of the woman behind all the science. That really made me feelokay about dying whenever my time come, shed told me. Oh right, Deborah said, they at work aint they? Gladys said nothing, so Deborah raised her voice loud to make sure Gladyscould hear: I got a Internet! she yelled. In 2006 an NIH researcher gave thousands of tissue samples tothe pharmaceutical company Pfizer in exchange for about half a million dollars.He was charged with violating a federal conflict of interest law, not because hefailed to disclose his financial interest or the value of those tissues to the donors,but because federal researchers arent allowed to take money frompharmaceutical companies. I kept driving for a moment,thinking, Did they move the post office? There was aland deed from the small chunk of Clover property Deborah bought with twothousand dollars from her fathers asbestos settlement. John Hopkins took my wifes mothers body and used what they needed, heyelled into the microphone. Instead, she finds a photo of a battered Elsie, crying, with the hand of a white woman around her throat. I dont know how Im going to go, she said. Thats what I woke up knowin. There was a 1997newspaper mug shot of Lawrences son with a caption that said, WANTED. Whata lovely child. She did have them seizures, Deborah said. It wouldnt harm me if I died and yougave all my money to someone else. I jumped out of the car and ran into the field, to the spot where the old movietheater once stoodwhere Henrietta and Cliff once watched Buck Jones films. She look like she needs hersister. The photo was attached to the top corner of Elsies autopsy report, which Lurzand I began reading, saying occasional phrases out loud: diagnosis of idiocy directly connected with syphilis self-induced vomiting by thrustingfingers down her throat for six months prior to death. In the end, it said, shewas vomiting coffee-ground material, which was probably clotted blood. What causes the confrontation between Deborah and Skloot? Forms or ownership-transferagreements ; Slavin just held up his arm and gave samples into a hotel betweenAnnapolis... 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