Hed found them while rummaging in the basement ofan abandoned building at the hospital sometime in the eighties, he said. What physical ailments did Deborah suffer from as a result of the excitement and stress of seeing her. Youknow, the way I see it is, if you think of doing that on the front end, more powerto you. The thing is, people cant think of doing that on the front end unless theyknow their tissues might be valuable to researchers in the first place. No! I yelled, gasping for breath. 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. She handed them to the man, who grabbed the autopsy report book and startedreading. He squeezed Deborahs face to his chest as her shoulders heaved insilent sobs, and tears rolled from Garys eyes. 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. For amoment I considered not showing it to Deborah. Think about it, she says. 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? 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. I love this scripturethats in Psalms, he told her. Project Gado shares rare photos of Crownsville State Hospital, where Henrietta Lacks' daughter Elsie Lacks was a patient and died in 1955. projectgado.org. And that's exactly what it's meant to do: re-humanize HeLa cells so that the world isn't tempted to value the scientific research over the life that was lost and made it all possible. Her head is twisted unnaturally to the left, chin raisedand held in place by a large pair of white hands. His eyes shot open and closed, and he began topreach, sweat pouring from his face. 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. One moment shed screech with joy over a fact Id found, the next shedpanic over a new fact that didnt sit well, or at the sight of me holding a page ofher mothers medical records. There is no evidence that the scientists who did research on patients atCrownsville got consent from either the patients or their parents. And the scale of tissue research is only getting bigger. Often indefinitely. Elsie had a sever case of epilepsy, resulting in her stay at Crownsville. There was a 1997newspaper mug shot of Lawrences son with a caption that said, WANTED. You keep reportin,and dont you worry about meI feel good. I smiled. Then, on Sunday morning, five days after September 11, Deborah went tochurch to pray for Alfred, whose trial was only a few days away, and to ask thatthe Henrietta Lacks conference be rescheduled. There were more than a hundred pages, many of them crumpled, folded, ortorn, all of them out of order. The timeline below shows where the character Lucille Elsie Pleasant appears in The Immortal Life of Henrietta Lacks. The dilapidated interior of the hospital reflects the ravages of the years since its closure. 1. Im going to get a web page up aboutmy mother and hopefully be getting some donations and funding so I can comeback down here put a monument up on her grave and turn that old home-houseinto a museum that will remind people of my mother down here! What you put in there? Gladys asked, like Deborah was crazy. 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 dont want to cause problems for science, Sonny told meas this book went to press. If you can figure that out, Id like toknow. 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. 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]. 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. In the next room, her husband moaned from a hospitalbed, just days from death. It wouldnt harm me if I died and yougave all my money to someone else. When Ithink about this hair, Im not as lonely. So isredness and swelling, which could explain why her red welts didnt go awaydespite all the Benadryl she drank. What reason does Deborah give for not wanting Skloot to type out Henriettas records word-for-word? Elsie wasnt like Henriettas other children, because she was born with epilepsy, a mental condition that causes her brain not to process and function normally. Adverb Form Of Think, Our time is running out. When heanswered the phone I said, Hey Sonny, its Rebecca, and for a moment the linewent silent. Then he pointed around the room at Davon andJaBreas other cousins, saying, So will that child and that child and thatchild. He motioned for us to come sit in his office. 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. A reporter friend called mycell phone and told me the news, saying, Dont go to D.C., its not safe. Iturned my car around as the second plane hit, and by the time I got home, the TVwas filled with footage of the Pentagons wreckage and buildings throughoutD.C. I think its fair to say its interfered withscience, he said. You know they shot my mother cells into space andblew her up with nuclear bombs? There is, ofcourse, a physical body, so there has to be a spiritual body. HeLa? I asked Gary. When Iwalked into his living room he was standing on a plastic folding chair in a brightturquoise shirt, changing a lightbulb. Shejust laughed like I was crazy. 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. In 2006, some seven hundred new mothers found outthat doctors had taken their placentas without consent to test for abnormalitiesthat might help the hospital defend itself against future lawsuits over birthdefects. When we got to Clover, we walked along the river, down Main Street, andthrough Henriettas tobacco field. The same is likely true of at least one otherstudy, called The Use of Deep Temporal Leads in the Study of PsychomotorEpilepsy, which involved inserting metal probes into patients brains. JavaScript seems to be disabled in your browser. I stood. Years later, I asked Wayne Grody, who was in the thick of the debate in thenineties, why the congressional recommendations and NBAC report seemed tohave vanished. WEAPON There were order forms for buying HeLa cells online, receipts,newsletters from Deborahs church, and seemingly endless copies of the photo ofHenrietta, hands on hips. The last time she knocked, she stormed past me into the bathroom and leanedover the sink, her face close to the mirror. That was the Lord talking to you. Well, hallelujah, Deborah said, giggling. 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. 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. Get Started. Skloot and Deborah know that this is not okay. I could see people starting to say, No, you cant take my tissues, she toldme. For the best experience on our site, be sure to turn on Javascript in your browser. Who paid for this room? Weve been through this! I said. His arms thrustclosed, hands clasping each side of Deborahs head, palms to her jaw, fingersspread from the back of her skull to the bridge of her nose. Deborah had gone over to her nieces house on Mothers Day, a week and ahalf before my callSonny had made crab cakes for her, the grandchildren werethere, and everyone laughed and told stories. A few minutes later, she jumped up and grabbed her dictionary.They diagnosed my sister with idiocy? she said, then started reading thedefinition out loud. This was the best medical treatment available at the time for this terrible disease. 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. Because of the Health Insurance Portability and Accountability Act (HIPAA)of 1996, there is now clear federal law in place to prevent the kind of privacyviolation that happened to the Lacks family when doctors at Hopkins releasedHenriettas name and her medical records. Can Deborah get a copy of that autopsy report? I asked Lurz. 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. Id like to have this for my wall. She handed it back to meand asked me to read it out loud. 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. But just beyond the fairgrounds lies a relic of a darker part of Maryland's history: the abandoned campus of Crownsville State Hospital. Learn how historic preservation can unlock your community's potential. They could attempt to stop HeLaresearch through a lawsuit, arguing that its impossible to anonymize Henriettascells, which contain their DNA. The next morning when he called, she didnt answer. 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. Dont make yourself sick over something you cantdo nothin about, Gary whispered to Deborah as she rubbed the welts on hereyes. There was aland deed from the small chunk of Clover property Deborah bought with twothousand dollars from her fathers asbestos settlement. Hallelujah,amen. For the first time since Gary stood from his chair, he looked straight at me. Beautiful andotherworldlyglowing green and moving like water, calm and ethereal, lookingprecisely like heavenly bodies might look. As a poor African-American female child, Elsie was among the most vulnerable and the least likely to receive fair treatment. Its my sister!Gary stopped smiling and reached for the picture. It lifted my burden. I wont, I told her, and I meant it. 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. How can you tell that Elsies photograph and autopsy are deeply troubling to Deborah? When the films ended, Deborah jumped out of bed and put in yet anothervideo. When they stop at a hotel for the night, Deborah finally gives Skloot Henrietta's medical records to read. Elsie Lacks was the second child of Henrietta Lacks. Im not sure what to do about it, but Im pretty sure itsweird to say everybody gets money except the people providing the rawmaterial. Various policy analysts, scientists, philosophers, and ethicists have suggestedways to compensate tissue donors: creating a Social Securitylike system inwhich each donation entitles a person to increasing levels of compensation;giving donors tax write-offs; developing a royalty system like the one used forcompensating musicians when their songs are played on the radio; requiring thata percentage of profits from tissue research go to scientific or medical charities,or that all of it be funneled back into research. Unaccustomed to dealing with dead bodies, she focused her gaze away from Henriettas eyes. Deborah ran her finger across Elsies face in the Crownsville photo. One survey found that 53percent of laboratories had stopped offering or developing at least one genetictest because of patent enforcement, and 67 percent felt patents interfered withmedical research. On May 21, 2009, after leaving many messages, I called again. You'll also get updates on new titles we publish and the ability to save highlights and notes. 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. The Bible tells us so. He explained to Miss Rebecca that Henriettas was an angel that God sent to the world to help us. She admits to Skloot that the picture of Elsie is really getting to her. Inside we found Gladys sitting in her darkwood-paneled living room. 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. 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