Henrietta Lacks Consent Quotes

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I hereby give consent to the staff of The Johns Hopkins Hospital to perform any operative procedures and under any anaesthetic either local or general that they may deem necessary in the proper surgical care and treatment of:
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Rebecca Skloot (The Immortal Life of Henrietta Lacks)
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A physician violates his duty to his patient and subjects himself to liability if he withholds any facts which are necessary to form the basis of an intelligent consent by the patient to the proposed treatment.” He wrote that there needed to be “full disclosure of facts necessary to an informed consent.
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Rebecca Skloot (The Immortal Life of Henrietta Lacks)
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Nearly seven years after Moore originally filed suit, the Supreme Court of California ruled against him in what became the definitive statement on this issue: When tissues are removed from your body, with or without your consent, any claim you might have had to owning them vanishes. When you leave tissues in a doctor’s office or a lab, you abandon them as waste, and anyone can take your garbage and sell it. Since Moore had abandoned his cells, they were no longer a product of his body, the ruling said. They had been “transformed” into an invention and were now the product of Golde’s “human ingenuity” and “inventive effort.
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Rebecca Skloot (The Immortal Life of Henrietta Lacks)
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As a result of its investigation, the NIH said that to qualify for funding, all proposals for research on human subjects had to be approved by review boards—independent bodies made up of professionals and laypeople of diverse races, classes, and backgrounds—to ensure that they met the NIH’s ethics requirements, including detailed informed consent. Scientists said medical research was doomed. In a letter to the editor of Science, one of them warned, “When we are prevented from attempting seemingly innocuous studies of cancer behavior in humans … we may mark 1966 as the year in which all medical progress ceased.
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Rebecca Skloot (The Immortal Life of Henrietta Lacks)
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As a result of its investigation, the NIH said that to qualify for funding, all proposals for research on human subjects had to be approved by review boards—independent bodies made up of professionals and laypeople of diverse races, classes, and backgrounds—to ensure that they met the NIH’s ethics requirements, including detailed informed consent.
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Rebecca Skloot (The Immortal Life of Henrietta Lacks)
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Henrietta was a black woman born of slavery and sharecropping who fled north for prosperity, only to have her cells used as tools by white scientists without her consent. It was a story of white selling black, of black cultures “contaminating” white ones with a single cell in an era when a person with “one drop” of black blood had only recently gained the legal right to marry a white person. It was also the story of cells from an uncredited black woman becoming one of the most important tools in medicine. This was big news.
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Rebecca Skloot (The Immortal Life of Henrietta Lacks)
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the negative press about Southam’s work had gotten the attention of the NIH, which funded his research and required its investigators to get consent for all studies involving humans. In response to the Southam situation, the NIH investigated all their grantee institutions and found that only nine out of fifty-two had any policy in place to protect the rights of research subjects.
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Rebecca Skloot (The Immortal Life of Henrietta Lacks)
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The tribunal set forth a ten-point code of ethics now known as the Nuremberg Code, which was to govern all human experimentation worldwide. The first line in that code says, “The voluntary consent of the human subject is absolutely essential.
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Rebecca Skloot (The Immortal Life of Henrietta Lacks)
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The term informed consent first appeared in court documents in 1957, in a civil court ruling on the case of a patient named Martin Salgo. He went under anesthesia for what he thought was a routine procedure and woke up permanently paralyzed from the waist down. The doctor hadn’t told him the procedure carried any risks at all. The
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Rebecca Skloot (The Immortal Life of Henrietta Lacks)
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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. That fluid protects the brain from damage, but makes it very difficult to X-ray, since images taken through fluid are cloudy. Pneumoencephalography involved drilling holes into the skulls of research subjects, draining the fluid surrounding their brains, and pumping air or helium into the skull in place of the fluid to allow crisp X-rays of the brain through the skull. the side effects--crippling headaches, dizziness, seizures, vomiting--lasted until the body naturally refilled the skull with spinal fluid, which usually took two to three months. Because pneumoencephalography could cause permanent brain damage and paralysis, it was abandoned in the 1970s. "There is no evidence that the scientists who did research on patients at Crownsville got consent from either the patients of their parents. Bases on the number of patients listed in the pneumoencephalography studyand the years it was conducted, Lurz told me later, it most likely involved every epileptic child in the hospital including Elsie. The same is likely true of at lest on other study called "The Use of Deep Temporal Leads in the Study of Psychomotor Epilepsy," which involved inserting metal probes into patients' brains.
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Rebecca Skloot (The Immortal Life of Henrietta Lacks)
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But when he instructed his staff to give the injections without telling patients they contained cancer cells, three young Jewish doctors refused, saying they wouldn’t conduct research on patients without their consent. All three knew about the research Nazis had done on Jewish prisoners. They also knew about the famous Nuremberg Trials.
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Rebecca Skloot (The Immortal Life of Henrietta Lacks)
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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 fluid. That fluid protects the brain from damage, but makes it very difficult to X-ray, since images taken through fluid are cloudy. Pneumoencephalography involved drilling holes into the skulls of research subjects, draining the fluid surrounding their brains, and pumping air or helium into the skull in place of the fluid to allow crisp X-rays of the brain through the skull. The side effects—crippling headaches, dizziness, seizures, vomiting—lasted until the body naturally refilled the skull with spinal fluid, which usually took two to three months. Because pneumoencephalography could cause permanent brain damage and paralysis, it was abandoned in the 1970s. There
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Rebecca Skloot (The Immortal Life of Henrietta Lacks)
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As a result of its investigation, the NIH said that to qualify for funding, all proposals for research on human subjects had to be approved by review boards—independent bodies made up of professionals and laypeople of diverse races, classes, and backgrounds—to ensure that they met the NIH’s ethics requirements, including detailed informed consent. Scientists said medical research was doomed. In a letter to the editor of Science, one of them warned, “When we are prevented from attempting seemingly innocuous studies of cancer behavior in humans … we may mark 1966 as the year in which all medical progress ceased.” Later that year, a Harvard anesthesiologist named Henry Beecher published a study in the New England Journal of Medicine showing that Southam’s research was only one of hundreds of similarly unethical studies. Beecher published a detailed list of the twenty-two worst offenders, including researchers who’d injected children with hepatitis and others who’d poisoned patients under anesthesia using carbon dioxide. Southam’s study was included as example number 17. Despite scientists’ fears, the ethical crackdown didn’t slow scientific progress. In fact, research flourished. And much of it involved HeLa. 18
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Rebecca Skloot (The Immortal Life of Henrietta Lacks)
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But the history of Hopkins Hospital certainly isn’t pristine when it comes to black patients. In 1969, a Hopkins researcher used blood samples from more than 7,000 neighborhood children—most of them from poor black families—to look for a genetic predisposition to criminal behavior. The researcher didn’t get consent. The American Civil Liberties Union filed suit claiming the study violated the boys’ civil rights and breached confidentiality of doctor-patient relationships by releasing results to state and juvenile courts. The study was halted, then resumed a few months later using consent forms. And in the late nineties, two women sued Hopkins, claiming that its researchers had knowingly exposed their children to lead, and hadn’t promptly informed them when blood tests revealed that their children had elevated lead levels—even when one developed lead poisoning. The research was part of a study examining lead abatement methods, and all families involved were black. The researchers had treated several homes to varying degrees, then encouraged landlords to rent those homes to families with children so they could then monitor the children’s lead levels. Initially, the case was dismissed. On appeal, one judge compared the study to Southam’s HeLa injections, the Tuskegee study, and Nazi research, and the case eventually settled out of court. The Department of Health and Human Services launched an investigation and concluded that the study’s consent forms “failed to provide an adequate description” of the different levels of lead abatement in the homes.
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Rebecca Skloot (The Immortal Life of Henrietta Lacks)
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If tissue samples--including blood cells--became patients' property, researchers taking them without consent and property rights up front would risk being charged with theft. The press ran story after story quoting lawyers and scientists saying that a victory for Moore would "create chaos for researcher" and [sound] the death knell to the university physician-scientist." They called it "a threat to the sharing of tissue for research purposes," and worried that patients would block the progress of science by holding out for excessive profits, even with cells that aren't worth, millions like Moore's.
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Rebecca Skloot (The Immortal Life of Henrietta Lacks / Natives / Why Im No Longer Talking To White People About Race)
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It cannot be denied that in cases of child rape the question of consent cannot arise at all, simply because a child or worst still an infant lacks mental power or knowledge to provide “consent” or even lacks physical ability to restrain. Moreover such an act subjects the child/infant to physical trauma, leading to even physical , mental and psychological ailment. To eliminate the horror from the face of the earth, I firmly believe we need to accept capital punishment as an apt punishment for subjecting a child to such a ordeal
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Henrietta Newton Martin
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It cannot be denied that in cases of child rape the question of consent cannot arise at all, simply because a child or worst still an infant lacks mental power or knowledge to provide "consent" or even lacks physical ability to restrain. Moreover such an act subjects the child/infant to physical trauma, leading to even physical, mental, and psychological ailment. To eliminate the horror from the face of the Earth, I firmly believe we need to accept capital punishment as an apt punishment for subjecting a child to such an ordeal.
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Henrietta Newton Martin