Tons of focus seems to be on what was taken from Henrietta Lacks without her permission, and whether or not her family should share in the benefits that have come as a result.
An Era Without Informed Consent
Like a reporter, Skloot is careful to document the facts of the case.
Henrietta went straight to the admissions desk and told the receptionist she was there for her treatment. Then she signed a form with the words OPERATION PERMIT at the top of the page. It said:
“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: __________________.”
Henrietta printed her name in the blank space. A witness with illegible handwriting signed a line at the bottom of the form, and Henrietta signed another.
That, evidently, was it. Informed consent and signing away of rights of bodily integrity, all in an era in which such terms and concepts were all but unknown. Whether Lacks was aware of it, or even in a position to give her consent, samples were collected as they were from all other patients seen in that hospital for the same procedure.
With Henrietta unconscious on the operating table in the center of the room, her feet in stirrups, the surgeon on duty, Dr. Lawrence Wharton Jr., sat on a stool between her legs. He peered inside Henrietta, dilated her cervix, and prepared to treat her tumor. But first -- though no one had told Henrietta that [Dr. Richard Wesley] TeLinde was collecting samples or asked if she wanted to be a donor -- Wharton picked up a sharp knife and shaved two dime-sized pieces of tissue from Henrietta’s cervix: one from her tumor, and one from the healthy cervical tissue nearby. Then he placed the samples in a glass dish.
But there are a lot of complicating factors. There was no law or code of ethics at the time that required doctors to ask permission before taking tissue from a living patient. Indeed, doctors of the era were known to do much worse than surreptitiously take samples from their patients.
In February 1954, [virologist Chester] Southam loaded a syringe with saline solution mixed with HeLa. He slid the needle into the forearm of a woman who’d recently been hospitalized for leukemia, then pushed the plunger, injecting about five million of Henrietta’s cells into her arm. Using a second needle, Southam tattooed a tiny speck of India ink next to the small bump that formed at the HeLa injection site. That way, he’d know where to look when he reexamined the woman days, weeks, and months later, to see if Henrietta’s cancer was growing on her arm. He repeated this process with about a dozen other cancer patients. He told them he was testing their immune systems; he said nothing about injecting them with someone else’s malignant cells.
Intentionally injecting patients with cancerous cells without telling them (or perhaps even knowing) the risks. Lying to them, in fact. All of the patients that Southam did this to developed hard, cancerous tumors like the ones that had grown initially inside Henrietta Lacks (HeLa, get it?). Most of these tumors he was able to remove, but in four of his patients, these nodules of cancer kept growing back.
He removed them, but they returned again and again. In one patient, Henrietta’s cancer cells metastasized to her lymph nodes.
Oh well. You have to break a few eggs to make an omelette, right? But injecting the most aggressive cancer ever discovered into other cancer patients wasn’t good enough for Southam. He wanted to inject HeLa into healthy people. He needed, you know, a control group. So he turned to a group of men imprisoned at Ohio State Penitentiary, who had volunteered for similar experiments of Southam’s in the past.
Sixty-five prisoners -- murderers, embezzlers, robbers, and forgers -- lined up on wooden benches for their injections. Some wore white hospital garb; others came off work gangs wearing blue dungarees.
At least is can be said that some rudimentary form of informed consent was at work with these prisoners. When asked why they would volunteer for such a risky test…
The prisoners’ replies were like a refrain: “I done a girl a great injustice, and I think it’ll pay back a little bit what I did to her.” “I believe the wrong that I have done, in the eyes of society, this might make right on it.”
But not all of Southam’s victims were volunteers. Did that matter to him? After all, he was pursuing a higher calling.
In a statement he’d later repeat again and again during hearings about his research, Southam wrote, “It is, of course, inconsequential whether these are cancer cells or not, since they are foreign to the recipient and hence are rejected. The only drawback to the use of cancer cells is the phobia and ignorance that surrounds the word cancer.”
Because of that “phobia and ignorance,” Southam wrote, he didn’t tell patients the cells were cancerous because he didn’t want to cause any unnecessary fear. As he would say, “To use the dreaded word ‘cancer’ in connection with any clinical procedure on an ill person is potentially deleterious to that patient’s well-being, because it may suggest to him (rightly or wrongly) that his diagnosis is cancer or that his prognosis is poor. … To withhold such emotionally disturbing but medically nonpertinent details … is in the best tradition of responsible clinical practice.”
Skloot correctly points out that the deception was not for the benefit of his patients, but for his own, for certainly fewer patients would have agreed to be part of his medical experiments if they had known what he was doing to them.
But Southam was far from the only doctor who acted this way. This was an era in which the idea of informed consent did not exist, in which doctors routinely did what was best for their research interests. It was not until the horrors of the Tuskegee experiment became public -- and its comparisons to the medical ethics of the Nazi regime -- that things began to change.
You Still Don’t Own Your Tissues
Unfortunately, the medical profession is no less conflicted today on a similar issue. Although it is now more or less universally understood that doctors can’t perform research on humans without first documenting that they have obtained informed consent from them, the larger issue raised by Skloot’s book and Henrietta Lacks’s case -- that of a person’s ownership of their bodily tissues -- remains murky and unresolved.
Much of the medical profession actively opposes the idea.
David Korn, vice provost for research at Harvard University, argues that giving patients control over their tissues is shortsighted. “Sure,” he says, “consent feels nice. Letting people decide what’s going to happen with their tissue seems like the right thing to do. But consent diminishes the value of tissue.” To illustrate this, Korn points to the Spanish flu pandemic. In the 1990s, scientists used stored tissue samples from a soldier who died in 1918 to re-create the virus’s genome and study why it was so deadly, with hopes of uncovering information about the current avian flu. In 1918, asking that soldier’s permission to take tissues for this kind of future research would have been impossible, Korn says. “It was an inconceivable question -- no one even knew what DNA was!”
Korn’s argument is persuasive as far as it goes, but it assumes that owners of tissue would need to consent to every future use of their tissues. A more blanket permission could conceivably be given -- much the the consent now routinely used for organ donation. Those donors don’t get a say in what their organs may be used for. But, honestly, I don’t know how seriously I should be taking Korn’s arguments, since he reveals some pretty sloppy thinking the the very next paragraph.
For Korn, the consent issue is overshadowed by a public responsibility to science: “I think people are morally obligated to allow their bits and pieces to be used to advance knowledge and to help others. Since everybody benefits, everybody can accept the small risks of having their tissue scraps used in research.” The only exception he would make is for people whose religious beliefs prohibit tissue donation. “If somebody says being buried without all their pieces will condemn them to wandering forever because they can’t get salvation, that’s legitimate, and people should respect it,” Korn says. But he acknowledges that people can’t raise those objections if they don’t understand their tissues are being used in the first place.
So, let me get this straight. Right now, tissues are routinely taken for research without obtaining consent or even disclosing to the donors that it is happening. And that’s the way it should stay -- unless someone has a religious objection. If you have ethical concerns, or evidence-based reasons why someone shouldn’t use your tissues without obtaining your consent: tough, you have a moral obligation to advance knowledge and help others. But if your objection is religious in nature, then you no longer have that moral obligation? Better not to risk you “wandering forever because you can’t get salvation.”
Despite my derision, I think I actually agree with the concept that people are morally obligated to advance knowledge and help others. But there have to be some limits and what can be taken from you without your consent and how it can be used. And some of the things now happening in this space legitimately leave me scratching my head.
Gene patents are the point of greatest concern in the debate over ownership of human biological materials, and how that ownership might interfere with science. As of 2005 -- the most recent year figures were available -- the U.S. government had issued patents relating to the use of about 20 percent of known human genes, including genes for Alzheimer’s, asthma, colon cancer, and, most famously, breast cancer. This means pharmaceutical companies, scientists, and universities control what research can be done on those genes, and how much resulting therapies and diagnostic tests will cost.
When I read this my first instinct was that it had to be wrong. The “gene for Alzheimer’s,” for example, if such a thing really exists, is, as far as I understand, biologically identical in every person that it occurs in. If my grandmother had it, and if I also have it, then those two genes are the same genes. Perhaps not comprised of the exact same materials, but functionally indistinguishable from one another. They’re kind of like two of the same kind of cakes made from two bags of the same brand of sugar. They’re not made of exactly the same sugar molecules, but they are otherwise identical to one another. If I’m thinking about this right, then how can someone else own a patent for the genes in my own body?
And sure enough, it turns out someone can’t. Patents on naturally-occurring genes were outlawed by the U.S. Supreme Court in 2013, a few years after Skloot’s book was published.
Human Tragedy and Magical Thinking
But my focus while I read this book was frankly less on these medical and ethical issues, and more on the human tragedy that seems to surround Henrietta and her family.
In the wake of Lacks’s death, a cousin named Ethel moved into her home to help care for her children. The family gossip was that Ethel was more interested in Henrietta’s widower husband than her children, and that certainly seemed to be the case.
Henrietta’s children grew up hungry. Every morning Ethel fed them each a cold biscuit that had to last them until dinner. She put latches and bolts on the refrigerator and cupboard doors to keep the children out between meals. They weren’t allowed ice in their water because it made noise. If they were good, she’d sometimes give them a slice of bologna or a cold wiener, maybe pour the grease from her bacon pan onto their biscuit, or mix some water with vinegar and sugar for dessert. But she rarely thought they were good.
[Henrietta’s oldest son] Lawrence came home from the military in 1953 and moved into a house of his own -- he had no idea what Ethel was doing to his brothers and [his sister] Deborah. As the children grew, Ethel woke them at dawn to clean the house, cook, shop, and do the laundry. In the summers she took them to Clover, where she’s send them into the fields to pick worms off tobacco leaves by hand. The tobacco juice stained their fingers and made them sick when it got in their mouths. But they grew used to it. The Lacks children had to work from sunup to sundown; they weren’t allowed to take breaks, and they got no food or water until nightfall, even when the summer heat burned. Ethel would watch them from the couch or a window, and if one of them stopped working before she told them to, she’d beat them all bloody. At one point, she beat Sonny so badly with an extension cord, he ended up in the hospital.
I’m no psychiatrist, but it seems safe to conclude that Ethel was a sick woman, whose perceptions of reality were twisted by her own feelings of jealousy and inadequacy. She took out her anger and frustrations on all the children of her former rival, but as Skloot goes on to explain, Ethel reserved her bitterest rage for Henrietta’s youngest son, Joe.
Sometimes [Ethel] would beat Joe for no reason while he lay in bed or sat at the dinner table. She’d hit him with her fists, or whatever she had close: shoes, chairs, sticks. She made him stand in a dark basement corner on one foot, nose pressed to the wall, dirt filling his eyes. Sometimes she tied him up with rope and left him down there for hours. Other times she left him there all night. If his foot wasn’t in the air when she checked on him, she’d whip his back with a belt. If he cried, she’d just whip him harder. And there was nothing Sonny or Deborah could do to help him; if they said anything, Ethel just beat them all worse. But after a while it got to where the beatings didn’t bother Joe. He stopped feeling pain; he only felt rage.
The damaging effects of all this abuse on Joe should have been plain for all to see.
The police came by the house more than once to tell [Henrietta’s husband] Day or Ethel to pull Joe off the roof, where he was lying on his stomach, shooting strangers on the sidewalk with his BB gun. When the police asked what he thought he was doing up there, Joe told them he was practicing to be a sniper when he grew up. They thought he was joking.
But, inexplicably (to my way of thinking, at least), the family came to blame Joe’s anti-social behavior on something else.
Joe grew into the meanest, angriest child any Lacks had ever known, and the family started saying something must have happened to his brain while he was growing inside Henrietta alongside that cancer.
Yes. That’s right. Years of child abuse had nothing to do with it. Gestating inside of mother with cervical cancer must be the answer. It’s magical thinking. And it permeates generations of Lackses and the people that populate Skloot’s moving portrait.
Even Joe (who later changed his name to Zakariyya) suffers from the cognitive dissonance.
“I think them cells is why I’m so mean,” he said. “I had to start fightin before I was even a person. That’s the only way I figure I kept them cancer cells from growin all over me while I was inside my mother. I started fightin when I was just a baby in her womb, and I never known nothin different.”
Deborah thinks it was more than that. “That evil woman Ethel taught him hate,” she said. “Beat every drop of it into his little body -- put the hate of a murderer into him.”
Zakariyya snorted when he heard Ethel’s name. “Livin with that abusive crazy woman was worse than livin in prison!” he yelled, his eyes narrowing to slits. “It’s hard to talk about what she did to me. When I get t thinkin about them stories, make me want to kill her, and my father.”
In the same moment that he is able to express anger at Ethel and her abuse of him, he is unable to connect it to his own violent temper and uncontrolled rage. It’s the cells. It’s HeLa. That’s why he is so mean.
Deborah
Henrietta’s daughter Deborah is very much the protagonist of Skloot’s book. It is Deborah that Skloot spends the most time with and who serves as her primary portal into the Lacks family history.
Growing up in the same house as Ethel, Deborah experienced abuse that was similar to that of her brothers. But after she and her brothers moved out and into the home of her brother Lawrence and his new wife Bobbette, a special kind of abuse was brought upon her by Ethel’s husband, Galen.
Deborah was ten years old. … She tried to tell Day when Galen touched her in ways she didn’t think he was supposed to, but Day never believed her. And Ethel just called Deborah words she’d never heard, like bitch and slut. In the car with Day driving and Ethel in the passenger seat, and everybody drinking except her, Deborah would sit in the back, pressed against the car door to get as far from Galen as she could. But he’d just slide closer. As Day drove with his arm around Ethel in front, Galen would grab Deborah in the backseat, forcing his hands under her shirt, in her pants, between her legs. After the first time he touched her, Deborah swore she’d never wear another pair of jeans with snaps instead of zippers again. But zippers didn’t stop him; neither did tight belts. So Deborah would just stare out the window, praying for Day to drive faster as she pushed Galen’s hands away again and again.
Imagine this scene. A ten-year-old girl. Sitting in the back seat of a car while her father has his arm around a woman that is not her mother. And while the husband of that woman is in the backseat with her, forcing his hands into her pants.
It gets worse.
When Deborah got to Galen’s house, she found him lying naked on the bed. She’d never seen a man’s penis and didn’t know what it meant for one to be erect, or why he was rubbing it. She just knew it all felt wrong.
“Ethel want a six-pack of soda,” Galen told Deborah, then patted the mattress beside him. “The money’s right here.”
Deborah kept her eyes on the floor and ran as fast as she could, snatching the money off the bed, ducking when he grabbed for her, then running down the stairs with him chasing after her, naked and yelling, “Get back here till I finish with you, Dale! You little whore! Just wait till I tell you father!” Deborah got away, which just made him madder.
Galen did tell Deborah’s (or Dale, as she was known in the family) father.
Deborah had started scrubbing people’s floors and ironing for small amount of money. She’d try to walk home alone after work, but Galen would usually pick her up along the way and try to touch her in the car. One day not long after her twelfth birthday, he pulled up beside Deborah and told her to get in. This time she kept walking.
Galen jammed the car into park and yelled, “You get in this damn car girl!”
Deborah refused. “Why should I get in?” she said. “I ain’t doing nothing wrong, it’s still daylight and I just walkin down the street.”
“Your father is looking for you,” he snapped.
“Let him come get me then! You been doin things to my body you ain’t supposed to do,” she yelled. “I don’t want to be nowhere with you by myself no more. Lord gave me enough sense to know that.”
She turned to run but he hit her, grabbed her by the arm, threw her into the car, and kept on having his way with her. A few weeks later, as Deborah walked home from work with a neighborhood boy named Alfred “Cheetah” Carter, Galen pulled up alongside them, yelling at her to get in the car. When Deborah refused, Galen raced up the street, tires screaming. A few minutes later he pulled up beside her again, this time with Day in the passenger seat. Galen jumped out of the car, cussing and screaming and telling her she was a whore. He grabbed Deborah by the arm, threw her in the car, and punched her hard in the face. Her father didn’t say a word, just stared through the windshield.
I guess my point is that these people -- Joe and Deborah and many other members of the Lacks family -- were abused. And the portrait that Skloot offers of Deborah in her later years, when Skloot was working with her to learn and expose the things that had happened to her mother -- is a direct result of this abuse.
Deborah’s was a world without silence. She yelled, punctuated most sentences with a raspy, high-pitched laugh, and maintained a running commentary on everything around her: “Look at the size of those trees!” “Isn’t that car a nice green!” “Oh my god, I’ve never seen such pretty flowers.” She walked down the street talking to tourists, sanitation workers, and homeless people, waving her cane at every person she passed, saying “Hi there, how y’all doin?” again and again.
Deborah was full of oddly charming quirks. She carried a bottle of Lysol in her car that she would often spray at random, only half-joking. She sprayed directly in front of my nose several times when I sneezed, but mostly she sprayed it out the window when we stopped somewhere that looked particularly unsanitary, which happened often.
These are not “oddly charming quirks.” They are signs of mental illness, of a flawed understanding of the world around her and the way it works. Deborah’s ups and downs are dramatic and sometime violent, and although Skloot never calls her manic depressive or bipolar, it’s difficult to reach another conclusion.
Elsie
Deborah had an older sister. Her name was Elsie, and Deborah never knew her because she was mentally impaired and was institutionalized in Crownsville State Hospital at a young age. After Henrietta died, she was more or less forgotten about. With Skloot’s help, Deborah is finally able to learn what became of her, and the facts are nothing short of gruesome.
The Crownsville that Elsie died in was far worse than anything Deborah had imagined. Patients arrived from a nearby institution packed in a train car. In 1955, the year Elsie died, the population of Crownsville was at a record high of more than 2,700 patients, nearly eight hundred above maximum capacity. In 1948, the only year figures were available, Crownsville averaged one doctor for every 225 patients, and its death rate was far higher than its discharge rate. Patients were locked in poorly ventilated cell blocks with drains on the floors instead of toilets. Black men, women, and children suffering with everything from dementia and tuberculosis to “nervousness,” “lack of self-confidence,” and epilepsy were packed into every conceivable space, including windowless basement rooms and barred-in porches. When they had beds, they usually slept two or more on a twin mattress, lying head to foot, forced to crawl across a sea of sleeping bodies to reach their beds. Inmates weren’t separated by age or sex, and often included sex offenders. There were riots and homemade weapons. Unruly patients were tied to their beds or secluded in locked rooms.
It was barbaric. And it is, unfortunately, the unremitting history of the world. A long and eternal river of human suffering, channeled by ignorance, fear, and loathing.
And it gets worse.
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, in 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 or their parents. Based on the number of patients listed in the pneumoencephalography study and the years it was conducted … it most likely involved every epileptic child in the hospital, including Elsie. The same is likely true of at least one other study, called “The Use of Deep Temporal Leads in the Study of Psychomotor Epilepsy,” which involved inserting metal probes into patients’ brains.
Medical experiments on a marginalized population without consent. It is a fitting coda to Skloot’s sad and tragic tale.
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This post first appeared on Eric Lanke's blog, an association executive and author. You can follow him on Twitter @ericlanke or contact him at eric.lanke@gmail.com.
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