Rebecca Skloot Quotes

Like the Bible said,' Gary whispered, 'man brought nothing into this world and he'll carry nothing out. Sometimes we care about stuff too much. We worry when there's nothing to worry about.

She's the most important person in the world and her family living in poverty. If our mother is so important to science, why can't we get health insurance?

But I tell you one thing, I don't want to be immortal if it mean living forever, cause then everybody else just die and get old in front of you while you stay the same, and that's just sad.

Some things you got to release. Gary said. The more you hold them in, the worse you get. When you release them, they got to go somewhere else. The Bible says He can carry all that burden.

When he asked if she was okay, her eyes welled with tears and she said, “Like I’m always telling my brothers, if you gonna go into history, you can’t do it with a hate attitude. You got to remember, times was different.

I keep with me all I know about you deep in my soul, because I am part of you, and you are me.

For me, it's writing a book and telling people about this story.

Like I'm always telling my brothers, if you gonna go into history, you can't do it with a hate attitude. You got to remember, times was different.

We must not see any person as an abstraction. Instead, we must see in every person a universe with its own secrets, with its own treasures, with its own sources of anguish, and with some measure of triumph. —ELIE WIESEL from The Nazi Doctors and the Nuremberg Code

Henrietta’s were different: they reproduced an entire generation every twenty-four hours, and they never stopped. They became the first immortal human cells ever grown in a laboratory.

Black scientists and technicians, many of them women, used cells from a black woman to help save the lives of millions of Americans, most of them white. And they did so on the same campus—and at the very same time—that state officials were conducting the infamous Tuskegee syphilis studies.

Only cells that had been transformed by a virus or a genetic mutation had the potential to become immortal.

if our mother cells done so much for medicine, how come her family can’t afford to see no doctors?

Henrietta’s cells have now been living outside her body far longer than they ever lived inside it,

I’ve tried to imagine how she’d feel knowing that her cells went up in the first space missions to see what would happen to human cells in zero gravity, or that they helped with some of the most important advances in medicine: the polio vaccine, chemotherapy, cloning, gene mapping, in vitro fertilization. I’m pretty sure that she—like most of us—would be shocked to hear that there are trillions more of her cells growing in laboratories now than there ever were in her body.

But today when people talk about the history of Hopkins’s relationship with the black community, the story many of them hold up as the worst offense is that of Henrietta Lacks—a black woman whose body, they say, was exploited by white scientists.

Whether you think the commercialization of medical research is good or bad depends on how into capitalism you are.

THE SKY ABOVE northeast India looked like mango skin.

If our mother so important to science, why can’t we get health insurance?

NEWS

Hopkins say they gave them cells away,” Lawrence yelled, “but they made millions! It’s not fair! She’s the most important person in the world and her family living in poverty. If our mother so important to science, why can’t we get health insurance?

When it came to growing viruses—as with many other things—the fact that HeLa was malignant just made it more useful.

My wife is a fire dragon without morning coffee,' he said. 'I better go make some.' It was two in the afternoon.

In 2012 researchers at Rensselaer Polytechnic Institute showed that two hours of exposure to a bright tablet screen at night, like an iPad or a Kindle, reduced melatonin levels by 22 percent.

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 autopsy or removing tissue from the dead without permission was illegal.

But I always have thought it was strange, if our mother cells done so much for medicine, how come her family can’t afford to see no doctors?

Like many doctors of his era, TeLinde often used patients from the public wards for research, usually without their knowledge.

She’s simply called HeLa, the code name given to the world’s first immortal human cells—her cells, cut from her cervix just months before she died.

He told them he was testing their immune systems; he said nothing about injecting them with someone else’s malignant cells.

man brought nothing into this world and he’ll carry nothing out. Sometime we care about stuff too much. We worry when there’s nothing to worry about.

For some people quitting foods, say chocolate, can be as hard as kicking heroin is for a junkie. Food hooks people by triggering the exact chemical reactions triggered in the brain by hard drugs. Or nicotine. Or alcohol. Or shopping. Or sex.

That there’s Henrietta’s mother,” he said, pointing to a lone tombstone near the cemetery’s edge, surrounded by trees and wild roses. It was several feet tall, its front worn rough and browned from age and weather.

When I tell people the story of Henrietta Lacks and her cells, their first question is usually Wasn’t it illegal for doctors to take Henrietta’s cells without her knowledge? Don’t doctors have to tell you when they use your cells in research? The answer is no—not in 1951, and not in 2009, when this book went to press. Today

As one of Henrietta’s relatives said to me, “If you pretty up how people spoke and change the things they said, that’s dishonest. It’s taking away their lives, their experiences, and their selves.” In

our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; and that we have the opportunity to refashion our institutions, culture, and conversations to transform the possibilities for the last chapters of all of our lives.

The Geys were determined to grow the first immortal human cells: a continuously dividing line of cells all descended from one original sample, cells that would constantly replenish themselves and never die.

angry—angry that Henrietta’s cells were being sold for twenty-five dollars a vial, and angry that articles

Baltimore, looking at a genetics textbook. Her

And when the Lord chooses an angel to do his work, you never know what they going to come back looking like.

People butcher history all the time,

As in all good training, in the end it doesn’t much matter who trained whom; we all got what we wanted.

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.

1953 and moved into a house of his own—he had no idea what

if you gonna go into history, you can’t do it with a hate attitude. You got to remember, times was different.

HeLa was a workhorse: it was hardy, it was inexpensive, and it was everywhere. And

Science is an inherently optimistic enterprise, the working assumption being that nature is comprehensible

restricting HeLa cell use would be disastrous. “The impact that would have on science is inconceivable,” he said.

The Way of All Flesh

But it’s exhausting to keep tabs on how much someone is feeling for you. It can make you forget that they feel too.

We must not see any person as an abstraction. Instead, we must see in every person a universe with its own secrets, with its own treasures, with its own sources of anguish, and with some measure of triumph. —ELIE WIESEL

Genetically speaking, humans are terrible research subjects. We’re genetically promiscuous—we mate with anyone we choose—and we don’t take kindly to scientists telling us who to reproduce with.

To discourage slaves from meeting or escaping, slave owners told tales of gruesome research done on black bodies, then covered themselves in white sheets and crept around at night, posing as spirits coming to infect black people with disease or steal them for research. Those sheets eventually gave rise to the white hooded cloaks of the Ku Klux Klan.

Day wouldn’t have understood the concept of immortal cells or HLA markers coming from anyone, accent or not—he’d only gone to school for four years of his life, and he’d never studied science. The only kind of cell he’d heard of was the kind Zakariyya was living in out at Hagerstown. So he did what he’d always done when he didn’t understand something a doctor said: he nodded and said yes.

The American Type Culture Collection—a nonprofit whose funds go mainly toward maintaining and providing pure cultures for science—has been selling HeLa since the sixties. When this book went to press, their price per vial was $256. The ATCC won’t reveal how much money it brings in from HeLa sales each year, but since HeLa is one of the most popular cell lines in the world, that number is surely significant.

an idea hit him, he sat wherever he was—at his desk, kitchen table, a bar, or behind the wheel of his car—gnawing on his ever-present cigar and scribbling diagrams on napkins or the backs of torn-off bottle labels.

Nelson-Rees had since been hired by the National Cancer Institute to help stop the contamination problem. He would become known as a vigilante who published “HeLa Hit Lists” in Science, listing any contaminated lines he found, along with the names of researchers who’d given him the cells. He didn’t warn researchers when he found that their cells had been contaminated with HeLa; he just published their names, the equivalent of having a scarlet H pasted on your lab door.

But I always have thought it was strange, if our mother cells done so much for medicine, how come her family can’t afford to see no doctors? Don’t make no sense. People got rich off my mother without us even knowin about them takin her cells, now we don’t get a dime.

one had multiple sclerosis and

Genetically speaking, humans are terrible research subjects. We're genetically promiscuous--we mate with anyone we choose--and we don't take kindly to scientists telling us who we should reproduce with. Plus, unlike plans and mice, it takes decades to produce enough offspring to give scientists much meaningful data.

When you go to the doctor for a routine blood test or to have a mole removed, when you have an appendectomy, tonsillectomy, or any other kind of ectomy, the stuff you leave behind doesn’t always get thrown out. Doctors, hospitals, and laboratories keep it. Often indefinitely.

You don’t have to spend much time with the elderly or those with terminal illness to see how often medicine fails the people it is supposed to help. The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit. These days are spent in institutions—nursing homes and intensive-care units—where regimented, anonymous routines cut us off from all the things that matter to us in life.

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.

Everyone in the audience knew what that meant. On top of saying they’d possibly wasted more than a decade and millions of research dollars, Gartler was also suggesting that spontaneous transformation—one of the most celebrated prospects for finding a cure for cancer—might not exist. Normal cells didn’t spontaneously become cancerous, he said; they were simply taken over by HeLa.

A few minutes later, seemingly out of nowhere, he pointed to the dirt and said, “You know, white folks and black folks all buried over top of each other in here. I guess old white granddaddy and his brothers was buried in here too. Really no tellin who in this ground now.” Only thing he knew for sure, he said, was that there was something beautiful about the idea of slave-owning white Lackses being buried under their black kin. “They spending eternity in the same place,” he told me, laughing. “They must’ve worked out their problems by now!

Many scientists believed that since patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment. And as Howard Jones once wrote, “Hopkins, with its large indigent black population, had no dearth of clinical material.

Ultimately the judge threw Moore’s suit out of court, saying he had no case. Ironically, in his decision, the judge cited the HeLa cell line as a precedent for what happened with the Mo cell line. The fact that no one had sued over the growth or ownership of the HeLa cell line, he said, illustrated that patients didn’t mind when doctors took their cells and turned them into commercial products. The judge believed Moore was unusual in his objections. But in fact, he was simply the first to realize there was something potentially objectionable going on.

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.

Scientists had been trying to keep human cells alive in culture for decades, but they all eventually died. Henrietta’s were different: they reproduced an entire generation every twenty-four hours, and they never stopped. They became the first immortal human cells ever grown in a laboratory.

When I saw those toenails,” Mary told me years later, “I nearly fainted. I thought, Oh jeez, she’s a real person. I started imagining her sitting in her bathroom painting those toenails, and it hit me for the first time that those cells we’d been working with all this time and sending all over the world, they came from a live woman. I’d never thought of it that way.

HELA CELLS ARE GROWN Black scientists and technicians, many of them women, used cells from a black woman to help save the lives of millions of Americans, most of them white. And they did so on the same campus—and at the very same time—that state officials were conducting the infamous Tuskegee syphilis studies.

Field studies have shown that ravens “call” wolves to large animals they find dead. Why invite wolves to dinner? Because, unlike birds of prey, the raven lacks a bill or talons designed to open a carcass. Someone else—wolf or human hunter or motor vehicle—needs to do the job. Magpies have been observed working with coyotes in much the same way as ravens work with wolves, and the canine hunters have learned to listen when corvids call.

But more than anything, they worried that since everyone was using different media ingredients, recipes, cells, and techniques, and few knew their peers’ methods, it would be difficult, if not impossible, to replicate one another’s experiments. And replication is an essential part of science: a discovery isn’t considered valid if others can’t repeat the work and get the same result.

But normal human cells—either in culture or in the human body—can’t grow indefinitely like cancer cells. They divide only a finite number of times, then stop growing and begin to die. The number of times they can divide is a specific number called the Hayflick Limit, after Leonard Hayflick, who’d published a paper in 1961 showing that normal cells reach their limit when they’ve doubled about fifty times.

Because of patent licensing fees, it costs $25,000 for an academic institution to license the gene for researching a common blood disorder, hereditary haemochromatosis, and up to $250,000 to license the same gene for commercial testing. At that rate, it would cost anywhere from $46.4 million (for academic institutions) to $464 million (for commercial labs) to test one person for all known genetic diseases.

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.

Some of the stories were conjured by white plantation owners taking advantage of the long-held African belief that ghosts caused disease and death. To discourage slaves from meeting or escaping, slave owners told tales of gruesome research done on black bodies, then covered themselves in white sheets and crept around at night, posing as spirits coming to infect black people with disease or steal them for research. Those sheets eventually gave rise to the white hooded cloaks of the Ku Klux Klan.

Lillian converted to Puerto Rican,” Gladys said, holding the letter to her chest. I looked at Gary, who sat beside her. “Lillian’s skin was real light, even lighter than mom’s,” Gary explained. “She married a Puerto Rican somewhere in New York. Since she could pass, she disowned her blackness—converted to Puerto Rican because she didn’t want to be black no more.

In recent years, using tissue samples from themselves, their families, and their patients, scientists had grown cells of all kinds—prostate cancer, appendix, foreskin, even bits of human cornea—often with surprising ease. Researchers were using that growing library of cells to make historic discoveries: that cigarettes caused lung cancer; how X-rays and certain chemicals

in immortality for the masses. He was a eugenicist: organ transplantation and life extension were ways to preserve what he saw as the superior white race, which he believed was being polluted by less intelligent and inferior stock, namely the poor, uneducated, and nonwhite. He dreamed of never-ending life for those he deemed worthy, and death or forced sterilization for everyone else. He’d later praise Hitler for the “energetic measures” he took in that direction.

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.

For Deborah and her family—and surely many others in the world—that answer was so much more concrete than the explanation offered by science: that the immortality of Henrietta’s cells had something to do with her telomeres and how HPV interacted with her DNA. The idea that God chose Henrietta as an angel who would be reborn as immortal cells made a lot more sense to them than the explanation

In 1999 the RAND Corporation published a report (the first and, so far, last of its kind) with a “conservative estimate” that more than 307 million tissue samples from more than 178 million people were stored in the United States alone. This number, the report said, was increasing by more than 20 million samples each year. The samples come from routine medical procedures, tests, operations, clinical trials, and research donations. They sit in lab freezers, on shelves, or in industrial vats of liquid nitrogen. They’re stored at military facilities, the FBI, and the National Institutes of Health.

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.

Empathy isn’t just something that happens to us—a meteor shower of synapses firing across the brain—it’s also a choice we make: to pay attention, to extend ourselves. It’s made of exertion, that dowdier cousin of impulse. Sometimes we care for another because we know we should, or because it’s asked for, but this doesn’t make our caring hollow. The act of choosing simply means we’ve committed ourselves to a set of behaviors greater than the sum of our individual inclinations: I will listen to his sadness, even when I’m deep in my own. To say “going through the motions”—this isn’t reduction so much as acknowledgment of the effort—the labor, the motions, the dance—of getting inside another person’s state of heart or mind.

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.

many scientists have interfered with science in precisely the way courts always worried tissue donors might do. “It’s ironic,” she told me. “The Moore court’s concern was, if you give a person property rights in their tissues, it would slow down research because people might withhold access for money. But the Moore decision backfired—it just handed that commercial value to researchers.” According to Andrews and a dissenting California Supreme Court judge, the ruling didn’t prevent commercialization; it just took patients out of the equation and emboldened scientists to commodify tissues in increasing numbers. Andrews and many others have argued that this makes scientists less likely to share samples and results, which slows research; they also worry that it interferes with health-care delivery.

Soon after Harris’s HeLa-chicken study, a pair of researchers at New York University discovered that human-mouse hybrids lost their human chromosomes over time, leaving only the mouse chromosomes. This allowed scientists to begin mapping human genes to specific chromosomes by tracking the order in which genetic traits vanished. If a chromosome disappeared and production of a certain enzyme stopped, researchers knew the gene for that enzyme must be on the most recently vanished chromosome. Scientists in laboratories throughout North America and Europe began fusing cells and using them to map genetic traits to specific chromosomes, creating a precursor to the human genome map we have today.

...her father finds being called a Holocaust surviver demeaning. 'When people talk about the Holocaust, they talk about gas chambers, Auschwitz -- the Holocaust is not just about that,' she said. 'It's about the little humiliations, the loss of dignity.' Her father made much the same point in the film. 'People talk about Sophie's Choice as if it was a rare event,' he said. 'It wasn't. Everybody had to make Sophie's Choice -- all of us. My mother left behind a four-year-old with the maid. You don't think I was beaten and shot at? There are no violins in my story. It is the most common thing that happened.

They also knew that there was a string of DNA at the end of each chromosome called a telomere, which shortened a tiny bit each time a cell divided, like time ticking off a clock. As normal cells go through life, their telomeres shorten with each division until they’re almost gone. Then they stop dividing and begin to die. This process correlates with the age of a person: the older we are, the shorter our telomeres, and the fewer times our cells have left to divide before they die. By the early nineties, a scientist at Yale had used HeLa to discover that human cancer cells contain an enzyme called telomerase that rebuilds their telomeres. The presence of telomerase meant cells could keep regenerating their telomeres indefinitely. This explained the mechanics of HeLa’s immortality: telomerase constantly rewound the ticking clock at the end of Henrietta’s chromosomes so they never grew old and never died.

Only cells that had been transformed by a virus or a genetic mutation had the potential to become immortal. Scientists knew from studying HeLa that cancer cells could divide indefinitely, and they’d speculated for years about whether cancer was caused by an error in the mechanism that made cells die when they reached their Hayflick Limit. They also knew that there was a string of DNA at the end of each chromosome called a telomere, which shortened a tiny bit each time a cell divided, like time ticking off a clock. As normal cells go through life, their telomeres shorten with each division until they’re almost gone. Then they stop dividing and begin to die. This process correlates with the age of a person: the older we are, the shorter our telomeres, and the fewer times our cells have left to divide before they die. By the early nineties, a scientist at Yale had used HeLa to discover that human cancer cells contain an enzyme called telomerase that rebuilds their telomeres. The presence of telomerase meant cells could keep regenerating their telomeres indefinitely.

Mary stood beside Wilbur, waiting as he sewed Henrietta’s abdomen closed. She wanted to run out of the morgue and back to the lab, but instead, she stared at Henrietta’s arms and legs—anything to avoid looking into her lifeless eyes. Then Mary’s gaze fell on Henrietta’s feet, and she gasped: Henrietta’s toenails were covered in chipped bright red polish. “When I saw those toenails,” Mary told me years later, “I nearly fainted. I thought, Oh jeez, she’s a real person. I started imagining her sitting in her bathroom painting those toenails, and it hit me for the first time that those cells we’d been working with all this time and sending all over the world, they came from a live woman. I’d never thought of it that way.”      

Hopkins was one of the top hospitals in the country. It was built in 1889 as a charity hospital for the sick and poor, and it covered more than a dozen acres where a cemetery and insane asylum once sat in East Baltimore. The public wards at Hopkins were filled with patients, most of them black and unable to pay their medical bills. David drove Henrietta nearly twenty miles to get there, not because they preferred it, but because it was the only major hospital for miles that treated black patients. This was the era of Jim Crow—when black people showed up at white-only hospitals, the staff was likely to send them away, even if it meant they might die in the parking lot. Even Hopkins, which did treat black patients, segregated them in colored wards, and had colored-only fountains. So when the nurse called Henrietta from the waiting room, she led her through a single door to a colored-only exam room—one in a long row of rooms divided by clear glass walls that let nurses see from one to the next.

At that point, more than 15,000 women were dying each year from cervical cancer. The Pap smear had the potential to decrease that death rate by 70 percent or more, but there were two things standing in its way: first, many women - like Henrietta - simply didn't get the test; and, second, even when they did, few doctors knew how to interpret the results accurately, because they didn't know what various stages of cervical cancer looked like under a microscope. Some mistook cervical infections for cancer and removed a woman's entire reproductive tract when all she needed was antibiotics. Others mistook malignant changes for infection, sending women home with antibiotics only to have them return later, dying from metastasized cancer. And even when doctors correctly diagnosed precancerous changes, they often didn't know how those changes should be treated.

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. And some enforce their patents aggressively: Myriad Genetics, which holds the patents on the BRCA1 and BRCA2 genes responsible for most cases of hereditary breast and ovarian cancer, charges $3,000 to test for the genes. Myriad has been accused of creating a monopoly, since no one else can offer the test, and researchers can’t develop cheaper tests or new therapies without getting permission from Myriad and paying steep licensing fees. Scientists who’ve gone ahead with research involving the breast-cancer genes without Myriad’s permission have found themselves on the receiving end of cease-and-desist letters and threats of litigation.

So together, Reader and Vincent used HeLa cells as the springboard to launch the first industrial-scale, for-profit cell distribution center. It started with what Reader lovingly referred to as his Cell Factory. In Bethesda, Maryland, in the middle of a wide-open warehouse that was once a Fritos factory, he built a glass-enclosed, room that housed a rotating conveyor belt with hundreds of test-tube holders built into it. Outside the glass room, he had a setup much like the Tuskegee's, with massive vats of culture medium, only bigger. When cells were ready for shipping, he'd sound a loud bell and all the workers in the building, including mailroom clerks, would stop what they were doing, scrub themselves at the sterilization station, grab a cap and gown, and line up at the conveyor belt. Some filled tubes, others inserted rubber stoppers, sealed tubes, or stacked them inside a walk-in incubator where they stayed until being packaged for shipping.

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

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

Today an estimated 13 percent of birds are threatened, according to the International Union for Conservation of Nature. So are 25 percent of mammals and 41 percent of amphibians, in large part because of human activity. Hydropower and road construction imperil China’s giant pandas. The northern bald ibis, once abundant in the Middle East, has been driven almost to extinction by hunting, habitat loss, and the difficulties of doing conservation work in war-torn Syria. Hunting and the destruction of wetlands for agriculture drove the population of North America’s tallest bird, the whooping crane, into the teens before stringent protections along the birds’ migratory route and wintering grounds helped the wild flock build back to a few hundred. Little brown bats are dying off in the United States and Canada from a fungus that might have been imported from Europe by travelers. Of some 300 species of freshwater mussels in North America, fully 70 percent are extinct, imperiled, or vulnerable, thanks to the impacts of water pollution from logging, dams, farm runoff, and shoreline development.

Myriad Genetics, which holds the patents on the BRCA1 and BRCA2 genes responsible for most cases of hereditary breast and ovarian cancer, charges $3,000 to test for the genes. Myriad has been accused of creating a monopoly, since no one else can offer the test, and researchers can’t develop cheaper tests or new therapies without getting permission from Myriad and paying steep licensing fees. Scientists who’ve gone ahead with research involving the breast-cancer genes without Myriad’s permission have found themselves on the receiving end of cease-and-desist letters and threats of litigation. In May 2009 the American Civil Liberties Union, several breast-cancer survivors, and professional groups representing more than 150,000 scientists sued Myriad Genetics over its breast-cancer gene patents. Among other things, scientists involved in the case claim that the practice of gene patenting has inhibited their research, and they aim to stop it. The presence of so many scientists in the suit, many of them from top institutions, challenges the standard argument that ruling against biological patents would interfere with scientific progress

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.