You cant ignore this issue of who gets the money and what the money isused for, says Clayton. JavaScript seems to be disabled in your browser. [1] Lucille Elsie Pleasant Character Analysis. What am I supposed to write? she asked. Elsie was admitted to Crownsville Hospital at age 10 when her mother was at the beginning of her sickness and could no longer care for her. The three of us walkedto the front door to look. 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. Iwalked into the bathroom, where she stood pointing to a quarter-sized welt onher forehead. Most recently, in July 2009,parents in Minnesota and Texas sued to stop the nationwide practice of storingand conducting researchwithout consenton fetal blood samples, many ofwhich can be traced back to the infants they came from. 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. No! I yelled, gasping for breath. Deborah pointed to the hives on her face. (273). He lives inParis, France.Davon Meade and (Little) Alfred Jr., Deborahs grandsons, live in Baltimore,as do twenty-two of Henriettas other descendants, including her grandchildren,great-grandchildren, and great-great-grandchildren. You'll also get updates on new titles we publish and the ability to save highlights and notes. But we both knew the break from HeLa wouldnt lastDeborah was stillscheduled to give a talk at the National Foundation for Cancer Researchconference in honor of Henrietta. Happybirthday, Boo, she said, her voice utterly calm. I keep thinkin, maybe if Iunderstood some science, then the story about my mother and sister wouldntscare me so much, she said. But consent diminishes the value oftissue. To illustrate this, Korn points to the Spanish flu pandemic. Complete your free account to request a guide. Then I can understand all that science about my mother!She thought about becoming a dental assistant, but was leaning toward radiationtechnologist so she could study cancer and help patients who were gettingradiation treatment like her mother. Death just following us and this story everywhere we go, shed say. 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. Canyou believe they even gave her that AID virus and injected her into monkeys?She stared at the floor, rocking violently, her chest rising and falling fast witheach breath. She was the oldest daughter of David and Henrietta. Gary sat, calmly rocking in his chair, watching Deborahs every move, like adoctor studying a patient. This is a capitalistsociety, says Wayne Grody People like Ted Slavin took advantage of that. Gould.) Its just like Pearl Harbor allover again, she said. Deborah grabbed her longblack raincoat, opened it wide, and raised it above her like an umbrella, noddingfor me to come under with her. This photo was not uploaded because you have already uploaded 15 photos to this memorial. 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. Ill do anything you want me to do,Lord, just help me with this BURDEN. 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. He smiles often. Convulsing. 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. Idecide who gets my money after I die. Creating notes and highlights requires a free LitCharts account. The Federal Policy for the Protection of Human Subjects, also known as theCommon Rule, requires informed consent for all human-subject research. She could have been my grandmother, never given a chance by society norms. And a great big picture of her, and maybe one ofthem wax statues. 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. Each morning Deborah left the assisted-livingfacility where she lived, and spent the day cooking and cleaning for the five orsix men living in her daughters home. 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. We tried to put the best one first. 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. Discover historic places across the nation and close to home. She quit after two years because her bodycouldnt take walking up and down stairs all day. There are very few pictures of Henrietta and her lost child, which makes them precious to the family and of special significance to their stories. The National Trusts federal tax identification number is 53-0210807. Godprovides that seed with the body he wishes; he gives each seed its own properbody. Henrietta was chosen, Gary whispered. When the films ended, Deborah jumped out of bed and put in yet anothervideo. Deborah laid her old picture of Elsie as a young girl next to the new photo. But I think she was just deaf. 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. Its ironic, she told me. It lifted my burden. The presence of so manyscientists in the suit, many of them from top institutions, challenges the standardargument that ruling against biological patents would interfere with scientificprogress. Hed found them while rummaging in the basement ofan abandoned building at the hospital sometime in the eighties, he said. 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. An employee named Paul Lurz had managed to salvage some of the records from that time, and he actually has Elsie's autopsy report. Sometime we care about stuff too much. Every researcher Ive mentioned that ideato shudders at the thought of it. You know theres no place in the worldshed rather be. Deborah was happy when she died: her grandson Little Alfred was nowtwelve, headed into the eighth grade, and doing well in school. For a moment, as Deborahs face began to sag andher body slumped, Davon thought maybe shed accidentally taken her sleepingpill before coming to church. Ijust hope its nice and calm. . In the book, when Henrietta gets awfully sick, with her bodily toxins poisoning her body and tumors everywhere, she goes to visit her daughter Elsie in Crownsville Hospital, where she was placed for her condition. Their value for science comes from being part of alarger collection. Ablind piano player tapped his way to the piano and began to play as thecongregation sang along: Stand by me, while I run this race, for I dont want torun this race in vain. Pullum pointed at me and grinned a mischievous grin. Are you sure? I asked. Industry-specific figures dont exist, butestimates say one human body can bring in anywhere from $10,000 to nearly$150,000. 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. As the conference approached, Deborah was calm, but I wasnt. And developers of the products that rely on human biological materialswould be out billions of dollars. Because of cases like these, a growing number of activistsethicists, lawyers,doctors, and patientsare arguing cases and pushing for new regulations thatwould grant people the right to control their tissues. I thankthe Lord for what happened. The doctor told Deborah a second stroke was almost always worse than thefirst. Vincent Racaniello, a professor of microbiologyand immunology at Columbia University, who once calculated that hes grownabout 800 billion HeLa cells for his own research, says that restricting HeLa celluse would be disastrous. Instant downloads of all 1699 LitChart PDFs Their recordsif theyd survivedcould have filled Lurzs smallstorage room several times over. For the next several months, as Icontinued my research, I told Deborah only the good things I found: storiesabout Henrietta dancing and watching the boys play baseball at Cliffs house,details about her family history from county records and wills. But sometimes He just wont let me keep Him out. Garys brown eyes went vacant, unfocused, as he stood slowly from his chair,spread his arms wide, and reached toward Deborah, who struggled to her feet,hobbled toward him, and wrapped her arms around his waist. I just keep lookin at thepicture of my sister. Shed been driving with both of Elsies pictures on thepassenger seat beside her, staring at them as she drove. The experiments were horrendous, to say the least. You'll be able to access your notes and highlights, make requests, and get updates on new titles. 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. We do know a few things about her. Im afraid Im as close asyoull get. His name was Paul Lurz, and he was the hospitals director of performanceand improvement, but he also happened to be a social worker whod majored inhistory, which was his passion. 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. 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. Several lawyers andethicists have suggested to me that since there is no way to anonymize HeLacells at this point, research on them should be covered by the Common Rule.And since some of the DNA present in Henriettas cells is also present in herchildren, its possible to argue that by doing research on HeLa, scientists are alsodoing research on the Lacks children. With the help of an author writing a book about Henrietta Lacks, Deborah found Lurz and asked for records on her sister, Elsie. There are no more uses of "autopsy" in The Immortal Life of Henrietta Lacks A sample of her cancer cells retrieved during a biopsy were sent to Dr. George Gey's nearby tissue lab. I stood. We goin to Annapolis see if they got more of my sister medical records? I dont know if thats a good idea, I said. It was bound to happen, but praise the Lord, Im okay. Velankanni Church Prayer, They put cells in culture dishes and expose them toradiation, drugs, cosmetics, viruses, household chemicals, and biologicalweapons, and then study their responses. We all just stood there, staring at those big white handswrapped around Elsies neck. In 2004 Deborah left her husband and moved into an assisted-living apartmentof her own, which shed longed to do for yearsshe was tired of fighting withPullum, plus their row house had too many stairs. Shestood inches from me, staring wild-eyed again for what felt like minutes. Eventually, Deborah grew quiet. It was overcrowded and understaffed in Elsie's time. 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. 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. I been tryin to keep Him out of this because weve got company, he said,flashing me a bashful grin. Science is not the highest value in society, Andrews says, pointing insteadto things like autonomy and personal freedom. Thefirst document in the stack was a Washington Post article from 1958, three yearsafter Elsies death, with the headline: OVERCROWDED HOSPITAL LOSES CURABLE PATIENTS Lack of Staff at Crownsville Pushes Them to Chronic StageThe second I read the title, I flipped the article facedown in my lap. Pretty soon youre gonna find yourselfconverted. I doubt it, I told him, and we both laughed. You knowthat. Deborah stopped fussing with the keys and collapsed back into the chair. There areheavenly bodies and earthly bodies, the beauty that belongs to heavenly bodies isdifferent from the beauty that belongs to earthly bodies. When Christoph projected Henriettas cells on the monitor in his lab a fewdays earlier, Deborah said, Theyre beautiful. She was right. Required fields are marked *. I was starting to wonder if you was even human cause younever cuss in front of me. Then, perhaps as an explanation for what just happened, she finally told meabout Cofield. Couldn't speak or hear. Elsie Lacks medical records show that she suffered abuse, experimentation, and mistreatment. You need to tell us whats goin on. Then he looked at Deborah. 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. Shell call when shesready. PDF downloads of all 1699 LitCharts literature guides, and of every new one we publish. She had five children, and one of them is sitting right over there. Ipointed at Deborah. "I later learned that while Elsie was at Crownsville, scientists often conducted research on patients there without consent, including one study titled "Pneumoencephalographic and skull X-ray studies in 100 epileptics." Pneumoencephalography was a technique developed in 1919 for taking images of the brain, which floats in a sea of liquid. Not because I thought itwas funny, but because I thought it was sweet that she was protective of hersister. ;'(, This is a soooo sad and very unfortunate, this could happen to any child so lonely and lost in your own world, neglected once the mom died and to be abused by medical quacks. Do something to relax yourself. I cant help it, Deborah said, waving him off with her hand. Oh my god! Deborah screamed, snatching the paper and staring at it,mouth wide. Follow The Immortal Life of Henrietta Lacks by Rebecca Skloot on WordPress.com, Reading for Writers: The Immortal Life of Henrietta Lacks by Rebecca Skloot, The Immortal Life of Henrietta Lacks by Rebecca Skloot. Elsie dies at age 15 in an asylum, under what Deborah and Rebecca . Scientists use these samples to develop everything from flu vaccines to penis-enlargement products. Change). Deborah saw his little eyes watching her, and shetried to wave, to tell him something was wrong, but she couldnt move. 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. She sat down next to me and pointed to a different word in her sisters autopsyreport. Teachers and parents! The white hand reminds Skloot and Deborah of the mostly white medical community that didn't always have the best interests of the patients at heart, especially when scientific research, and profits were at stake. Springfield Minor Hockey, Shereached into her bag and pulled out three pieces of paper: her birth certificate,Elsies birth certificate, and the legal document giving her power of attorneyover Elsie, something shed spent months getting, just in case anyone tried tostop her from doing precisely what we were doing. Stroke. I wish we had an archivist, he said. Sister Rebecca Skloot, Pullum said, I know this might not be the right timefor you, but its the right time for me. Amen, Deborah said from her seat beside me, her voice suddenly serious. Credit cards? But she keeps the picture of Elsie open on the front seat of her car, and it agitates her. 3. Black men, women, and children suffering with everythingfrom dementia and tuberculosis to nervousness, lack of self-confidence, andepilepsy were packed into every conceivable space, including windowlessbasement rooms and barred-in porches. I held a page of the records close to my face to make out the small script, thenbegan reading out loud, This twenty-eight-year-old something I cantread the handwriting positive Rh. The entry was dated November 2, 1949. She begins to get manic on Skloot, pretending to be very positive and bright about their discoveries. By the time they get to Annapolis to have a look at the records of Crownsville there, Skloot's worried. Read stories of people saving places, as featured in our award-winning magazine and on our website. A heart attack just afterMothers Dayshe wouldnt have wanted it another way. There is, ofcourse, a physical body, so there has to be a spiritual body. HeLa? I asked Gary. She wore no underwear, only a thin nightgown that had riddenabove her waist from hours in her wheelchair. 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. But many legal experts Ive talked with doubtsuch a case would succeed. Only time I really relax is when Im drivin down here, she said. Fill in your details below or click an icon to log in: You are commenting using your WordPress.com account. By the time they get to Annapolis to have a look at the records of Crownsville there, Skloot's worried. A few hours laterSonny dropped by to check on her, as he did nearly every day, and found her inher bed, arms crossed on her chest, smiling. They're like having in-class notes for every discussion!, This is absolutely THE best teacher resource I have ever purchased. Itwas sort of a generic word to describe someone who was slow, I said. 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. Lurz pulled out a volume that included some reports from 1955, the year Elsiedied, and Deborah squealed with excitement. When you go tothe doctor for a routine blood test or to have a mole removed, when you have anappendectomy, tonsillectomy, or any other kind of ectomy, the stuff you leavebehind doesnt always get thrown out. In May 2009 the American Civil Liberties Union, several breast-cancersurvivors, and professional groups representing more than 150,000 scientistssued Myriad Genetics over its breast-cancer gene patents. She lay on her side and curled herself aroundthe Crownsville picture of Elsie for so long, I thought shed fallen asleep. They were warpedwith age, coated in dust, and filled with thick, yellowed paper. Books: the best way to start a new year. Get Started. 2001. What she dint know was that no one would ever visit Elsie again., This makes me want to cry. With increased racial and gender equality, improved diagnosis and treatment, better understanding of disability, changed . Im afraid Crownsville wasnt a very nice place to be back then. Helooked at Deborah. I kept reading: This is how it will be when the dead are raised to life. Gary tells Deborah that her quest to find out about Elsie and Henrietta has been a way of honoring her. Deborah stands up to a supervisor that doesn't want her to have a copy of Elsie's autopsy an examination and dissection of a dead body typically to determine the cause of death, autopsy = examination of the dead body typically to determine the cause of death, She talked about a man she didn't name, saying, "I didn't think it was fit for him to steal my mother medical record and, As Henrietta's body cooled in the "colored" freezer, Gey asked her doctors if they'd do an, Though no law or code of ethics required doctors to ask permission before taking tissue from a living patient, the law made it very clear that performing an, The way Day remembers it, someone from Hopkins called to tell him Henrietta had died, and to ask permission for an, Day's cousin said it wouldn't hurt, so eventually Day agreed and signed an, Now there she was with a corpse, a stack of petridishes, and the pathologist, Dr. Wilbur, who stood hunched over the, Day wanted Henrietta to be presentable for the funeral, so he'd only given permission for a partial, Or maybe they did something to her during that, When Henrietta died, Day had agreed to let her doctors do an, pages of Gold's book and stumbled on the details of her mother's demise: excruciating pain, fever, and vomiting; poisons building in her blood; a doctor writing, "Discontinue all medication and treatments except analgesics;" and the wreckage of Henrietta's body during the, Then she asked Mary to tell the story about seeing her mother's red toenails during the, Cofield then filed a lawsuit against Deborah, Lawrence, Courtney Speed, the Henrietta Lacks Health History Museum Foundation, and a long list of Hopkins officials: the president, the medical records administrator, an archivist, Richard Kidwell, and Grover Hutchins, the director of, He demanded access to the medical records and, The photo was attached to the top corner of Elsie's, She handed them to the man, who grabbed the, Each time she panicked, she'd pat the bed and say, "Where's my sister, She moved across the room to the other bed, where she lay on her stomach and started reading her sister's, She sat down next to me and pointed to a different word in her sister's, Population figures are available at census. But you can haveeternal life. The store will not work correctly in the case when cookies are disabled. In the next room, her husband moaned from a hospitalbed, just days from death. Her head is twisted unnaturally to the left, chin raisedand held in place by a large pair of white hands. The last time she knocked, she stormed past me into the bathroom and leanedover the sink, her face close to the mirror. Soon they were speeding along the winding road from church, Deborahslipping in and out of consciousness in the passenger seat while Davon leanedover her, screaming, Dont you go to sleep, Ma! and slapping her hard acrossthe face every time she closed her eyes. Then I realized Id just passed theClover post officeit was across the street from a big, empty field. He mentions that Deborah Lacks lives in Baltimore, and that Day is still alive at eighty-four. So inthe end, the Common Rule doesnt actually govern most tissue research. The question is how to deal with this commercializationwhether scientists should be required to tell people their tissues may be usedfor profit, and where the people who donate those raw materials fit into thatmarketplace.