PDF Summary:The Immortal Life of Henrietta Lacks, by Rebecca Skloot

...

Skloot’s impromptu introduction to Henrietta’s incredible cells when she was 16 spawned a lifetime obsession. As Skloot studied biology in college and writing in graduate school, she continued to hear about and research Henrietta, discovering that her surviving family (1) didn’t approve of the massive reproduction of HeLa cells and (2) had been researched themselves for reasons unknown to them.

Among Henrietta’s family, one person stood out to Skloot as she performed her research: Deborah, Henrietta’s daughter, whose voice was curiously absent from interviews and articles about the Lacks family.

...

Although Henrietta had other suitors—she was considered the prettiest girl on the tobacco farm, which was called “Lacks Town”—she bore Day’s first child, a son named Lawrence, when she was 14. (She and Day had shared a room since Henrietta had moved to the farm, and so no one in the family was surprised when they became intimate.) Lucile Elsie, a second child, came when Henrietta was 18.

Elsie, as the daughter was called, suffered from a cognitive impairment. At the time, people referred to her as “simple.”

Henrietta and Day were married in 1941, when they were 20 and 25 respectively. Gladys, Henrietta’s sister, objected to the marriage because she thought Day would be a bad husband.

At the end of the year, a cousin who’d moved to Baltimore paid Lacks Town a visit. He’d gone north to work at the Bethlehem Steel plant at Sparrows Point, and he was living in Turner Station, a community of black steelworkers situated just outside of downtown Baltimore. The war effort, thrown into high gear by the bombing of Pearl Harbor, had created new opportunities for African-American workers—Sparrow’s Point would become the biggest steel plant in the world—and the cousin convinced Day and...

...

Upon examining Henrietta, Jones quickly located the lump, whose color and consistency was unlike any other lesion he’d seen (he described it in his notes as “grape Jello”) Even though Joseph had been delivered at Hopkins scant months before, no one had noted any sort of cervical abnormality, either upon delivery or at Henrietta’s six-week checkup. Which meant the lump had grown exponentially in just three months.

A few days later, Jones received Henrietta’s biopsy results. The pathologists had found Stage 1 epidermoid carcinoma.

Hopkins: A Hub of Cancer Research

Coincidentally, Jones and his superior, an internationally renowned gynecologist named Richard Wesley TeLinde, were currently researching cervical cancer. TeLinde had become a controversial figure among gynecologists due to his aggressive treatment of “noninvasive” carcinomas, which are carcinomas that grow on the surface of the cervix (carcinomas that penetrate the cervix are “invasive”). Whereas most gynecologists in the field believed noninvasive carcinomas (or “carcinoma in situ”) would stay on the surface of the cervix and remain nonfatal, TeLinde believed noninvasive carcinomas could _become...

...

The Two Sides of HeLa

Of course, the cells’ resiliency, which made them so valuable to researchers, was less welcome in terms of Henrietta’s health. According to Henrietta’s doctors, the radium and X-ray treatments had rid her of cancer; yet she maintained the cancer was spreading: She said she could feel it. She returned to the hospital twice, first with abdominal discomfort, then with an ache along her sides, but the doctors sent her home each time, writing in her record that there was no evidence that her cancer had come back.

(Latter-day research has shown that African-American patients were treated differently from white ones at the time Lacks was under medical care: They were admitted to hospitals at later stages of illness than their white counterparts, and when they were finally hospitalized, they received less pain medication and had higher mortality rates. Henrietta’s doctor says Henrietta received the same care as white patients of the time, but it’s impossible to know for sure.)

A matter of weeks after her second visit, when she’d complained of an ache and the doctors sent her home, Henrietta returned to the hospital with sharp pain in her abdomen...

...

Lawrence, meanwhile, though only 16, had been drafted into the military (he’d lied about his age to get into the local pool halls, but that lie also made him eligible for the draft). When he returned in 1953, he moved into his own house and so had no idea what Ethel was doing to his siblings. Day, too, was either unaware or in denial—rumor had it he was sleeping with Ethel.

In 1959, Lawrence moved in with his girlfriend, Bobbette Cooper, and she demanded that Lawrence’s siblings come live with them. This saved the boys from Ethel but didn’t save Deborah from Galen, who had begun touching her inappropriately. Deborah was only ten years old at the time, and she saw Galen as a surrogate father (Day was working two jobs, and Deborah felt closer to Galen than Day).

One day, when Deborah was 12, she was walking with a friend named Alfred “Cheetah” Carter when Galen pulled up in his car. He demanded that she get in the car with him. When she refused, he sped off. Soon he returned with Day in the passenger seat. Galen got out of the car, calling Deborah a “whore,” and threw her in the back seat of the car. Once she was in, he punched her in the face, splitting her eyebrow. Day...

...

The Tuskegee Syphilis Study

In the 1930s, US Public Health researchers at the Tuskegee Institute were curious about exactly how syphilis killed its carriers. To track the progression of syphilis in the human body, the researchers lured hundreds of syphilitic African-American men to participate in the study with free exams and meals, as well as a burial stipend for their families for when they passed away. These men were largely poor and uneducated, and their deaths were slow, painful, and entirely preventable: The doctors at the time knew that penicillin could cure them.

Beyond Polio

Once the scientists at the Distribution Center realized there would be no shortage of HeLa cells for the polio study, they began to send the cells more widely and for a variety of studies.

HeLa cells were especially valuable for the study of viruses. Viruses reproduce by modifying the genetic material of the infected cell, and because HeLa cells grew so rapidly, scientists were able to observe viruses’ effects at an accelerated rate.

Using HeLa cells, scientists made a number of advances in a relatively brief period of time, including:

• The development of a method for...

...

The Nuremberg Code

In 1947, seven Nazi doctors were sentenced to death by a US-led tribunal for performing monstrous experiments on imprisoned Jews. Among other horrors, these doctors had sewn siblings together in an effort to create Siamese twins and dissected living people to study organ function.

The tribunal proposed an ethical code, composed of ten points, to govern human experimentation across the globe. Dubbed the Nuremberg Code, the document’s first line mandates the “voluntary consent” of any human subject.

The problem was that the principles outlined in the Nuremberg Code weren’t law; in fact, at the time, there were no laws governing scientific research. For, although the notion of “informed consent” had been present in the law since 1957, it only applied to medical procedures, not scientific research.

So, over the objections of the doctors, the director of medicine ordered a resident to deliver the injections. The three doctors resigned and notified the press. Soon enough, the public outcry was vociferous enough to cause Southam’s and Mandel’s medical licenses to be suspended for a year.

Although the suspensions were stayed and...

...

The sensational newspaper headlines predicting hideous mouse people notwithstanding, the hybridization of human and animal cells resulted in significant advances in our knowledge of how genes work. Researchers discovered that, as time went on, the human-mouse hybrid cells would lose their human chromosomes. This behavior enabled researchers to track which chromosomes corresponded to which cell traits (because when a certain cell trait disappeared, researchers could correlate that disappearance to a lost chromosome).

...

One day Cheetah, drunk and high, began beating Deborah. On a previous occasion when Cheetah hit her she’d threatened him with a knife; now, when he stumbled toward the steps of their apartment, she pushed him down them. When she saw he was still alive, she dragged him outside—it was frigid and snowing—and left him on the ground without a coat to freeze.

When she woke the next morning, she found Cheetah still alive, sitting on their building’s front stoop. He thought he’d been jumped. Deborah put him in bed and then called Bobbette. She told Bobbette that she was going to kill Cheetah in his sleep with a monkey wrench. Bobbette convinced her not to, and the next day, while Cheetah was at work, Deborah and children moved out.

...

With the discovery that HeLa contamination was a global phenomenon, the story made the leap from specialized science journals to the popular press. And with that transition came renewed interest in the woman behind the “immortal” cells.

As it happened, only a year before the Naval researcher discovered that HeLa had crossed the Atlantic, Henrietta’s real name had appeared in print for the first time. Her doctor, Howard Jones, and several of his colleagues had published a tribute to George Gey, who had passed away from pancreatic cancer in 1971. In that tribute, which ran in a little-known obstetrics journal, the authors revealed that (1) Henrietta’s cancer had been misdiagnosed—it was an adenocarcinoma, not an epidermoid carcinoma—and (2) HeLa’s real name was Henrietta Lacks. But it wasn’t until 1973 that Henrietta’s name became widely known: A journalist for Science, one of the most prestigious journals in the world, issued a correction that the “Helen Lane” she’d referred to in her article was actually “Henrietta Lacks.”

...

A few days after Hsu’s call to Day, the family gathered at Lawrence’s, and Hsu and another colleague drew the Lackses’ blood. Deborah, who was 24 at the time, was petrified: She knew that her mother had gotten cancer at thirty and worried that she would get terminally ill at the same age, leaving her two children motherless.

In the days following Hsu’s visit, Deborah called Hopkins repeatedly to ask about her “cancer results.” The operators could find no record of any test. Deborah’s fears worsened, and she began to worry that, rather than trying to help the Lackses, the Hopkins doctors were causing them harm. She’d read about the Tuskegee syphilis study and Chester Southam (see Part 2: Chapter 6), and she wondered if Hsu had actually infected the family with her mother’s blood to see if they developed cancer.

Her suspicions were helped along by the family’s incomplete picture of Henrietta’s illness. When Deborah asked Day about the timeline and details of her mother’s death, Day told her, essentially, that Henrietta had been perfectly fine up until she started going to Hopkins. It was only after she started receiving treatment that her skin burned and she wasted...

...

With the appearance of the Rolling Stone article came further media inquiries, including from publications like Jet and Ebony that were marketed to African Americans. Given the historical moment, when memories of the Tuskegee syphilis study were still fresh and the Black Panthers were accusing the white-dominated medical establishment of racism, a story involving the improper collection and commodification of a black woman’s cells was timely news.

At the same time that Henrietta was becoming a known figure, McKusick and Hsu were publishing the results of their research into the Lacks’ genes. Incredibly, the authors presented the Lackses’ genetic information with labels like “Husband” and “Child 1” alongside Henrietta’s real name, which would allow anyone to know whose genetic information was whose. A breach of privacy like this would, in the present, be a crime under the 1996 Health Insurance Portability and Accountability Act (HIPAA) that could trigger fines of up to $250,000 or jail time.

The Lackses were totally oblivious to McKusick and Hsu’s publication. They didn’t even know that Hsu had drawn blood for a gene study; they thought the doctors were still...

...

Human Tissues and the Law

The patentability of biological matter had only recently been established in law. In 1980, a General Electric scientist had engineered a strain of bacteria that consumed oil and had been denied a patent because his “invention” was a living organism. The Supreme Court decided in the scientist’s favor, on account of the fact that oil-consuming bacteria weren’t naturally occurring and their existence was solely due to the scientist’s “ingenuity.”

And Golde had good reason to want to patent Moore’s cells. Although most cell lines contribute little to the study of disease and the development of medicines, Moore’s cells made rare proteins that could be used in cancer therapies. They also carried HLTV, a virus related to HIV, that could contribute to the development of an AIDS vaccine.

Once Moore learned what Golde had done, he sued Golde and UCLA for (1) using his tissue for research without his consent and (2) stealing his tissues. He was the first person in history to assert a claim over his own tissues and sue for damages.

The judge ended up throwing out Moore’s case. Part of his justification involved HeLa: He reasoned that if no one...

...

At the time, medical records weren’t confidential. Although various ethical codes, including the American Medical Association Code of Ethics and the Hippocratic Oath, stipulated that patient information be kept confidential, there was no federal law regarding its confidentiality. And although some states had passed laws of their own to protect patient information, Maryland wasn’t one of them.

Hippocratic Oath

Taken by doctors upon receiving their degree in medicine, the Hippocratic Oath includes several commitments Henrietta’s and her family’s doctors failed to uphold, including provisions for patients’ privacy and economic wellbeing.

“I swear to fulfill, to the best of my ability and judgment, this covenant:

I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.

I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.

_I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may...

...

Speed and Wyche’s lobbying on Henrietta’s behalf continued to bear fruit: The Maryland State Senate offered an “official congratulations” to Henrietta Lacks, and, in 1997, a congressman from Maryland paid formal tribute to Henrietta in the US House of Representatives. Speed and Wyche had also petitioned Hopkins for help in celebrating Henrietta’s life, and although the institution wasn’t sure what role to play, a small committee began meeting informally to discuss ways to commemorate Henrietta’s contribution to science.

Their efforts were derailed, unfortunately, by the appearance of Sir Lord Keenan Kester Cofield. Cofield claimed to be distantly related to Deborah by marriage—the family wasn’t exactly sure how—and when he called Deborah out of the blue, he told her he was a lawyer and that the family should copyright “Henrietta Lacks” and sue Hopkins for medical malpractice. He believed that Hopkins had made millions off of HeLa and that the Lackses were entitled to their share. (In his response to Speed and Wyche’s petition about Henrietta, an assistant to the president of Johns Hopkins emphasized that the school had never made any money from the culture and...

...

The first time Skloot called Deborah, mere weeks after her breakdown, Deborah was extremely enthusiastic about the book and alluded to all sorts of events in the family’s history—Skloot could barely keep up. The second time, Deborah was reticent. Deborah told Skloot that she couldn’t continue talking to her unless Skloot spoke to the men in the family: Day, Lawrence, and Sonny.

For days Skloot couldn’t get in touch with any of them. Finally, when she reached Day, he told her to leave him alone and hung up.

Skloot Visits Turner Station and Clover

Tired of seeing Skloot’s number on his pager, Sonny finally agreed to meet her. He’d spoken to Pattillo—although Skloot didn’t know this at the time—to ask about Skloot, and he promised to take Skloot to meet Lawrence, Day, and, possibly, Deborah, when they met up.

Skloot travelled to Baltimore from Pittsburgh. Unable to get in touch with Sonny upon her arrival, she decided to visit Turner Station and see if she could locate the Lackses’ old house (she’d come across the address in an old newspaper article). The article had also mentioned Courtney Speed’s foundation and her grocery store.

Turner Station in 1999 was no...

...

Presently Sonny handed Day Skloot’s tape recorder and told him to say what he knew about his wife. Rather than talk about Henrietta’s life, however, Day told the story of the day he went to Hopkins and signed off on Henrietta’s autopsy. He said that no one told him anything about keeping her cells alive; the doctors only said that, by performing the autopsy, they might be able to save Day’s children and grandchildren from cancer.

As Day spoke, Sonny and Bobbette chimed in, expressing their skepticism of the doctors’ intentions. According to them, Hopkins was known for experimenting on African Americans during that time, even going so far as to abduct them. Bobbette told Skloot that, as a child, she was forbidden from going near Hopkins after dark for fear of being kidnapped.

Hopkins in its Community

Unfortunately, Bobbette’s fears reflected the historical and sometimes monstrous mistreatment of African Americans by the American medical establishment.

Since the early 19th century, African Americans had traded tales of “night doctors” who would abduct people in the middle of the night for gruesome experiments. These tales weren’t just the product of...

...

Skloot and Deborah spent the next three days together. They explored Baltimore as they got to know each other and visited Deborah’s childhood homes.

And they spent hours together on Skloot’s bed in her B&B, poring over articles and documents concerning Henrietta. One day, when Skloot noticed a sizable manila folder on her pillow, she reached for it, asking Deborah if it was Henrietta’s medical records. Deborah screamed and dived onto the folder, and in an instant she’d packed her bag and was speeding toward the door. As she left, she told Skloot she didn’t know who to trust.

Meeting Zakariyya

The next day Deborah came to Skloot’s B&B as though nothing had happened and took Skloot to see Zakariyya. Skloot was worried—she knew about Zakariyya’s history of anger, and that he was the least inclined of the Lackses to talk about his mother—but Deborah assured her that if she noticed anything wrong, she’d remove them from the situation. Along with them for the visit were eight-year-old Davon and four-year-old Alfred, Deborah’s grandsons.

Zakariyya lived in an assisted-living facility—he had significant hearing loss and, without corrective lenses, he was nearly...

...

Deborah asked about the difference between DNA and cells, and Lengauer explained that DNA were in the cells, in the cell’s nucleus. He also explained how Henrietta’s cancer developed: Her HPV virus caused a change in her cells’ DNA that turned them cancerous. When it became clear that Deborah thought some of the cells they were looking at were normal and others cancerous, Lengauer informed her they were all cancerous.

After a bit of searching, Lengauer was able to find a cell in the middle of dividing. Zakariyya and Deborah were transfixed. The conversation shifted to Hopkins’s ill-treatment of the Lackses, and Lengauer agreed with Deborah and Zakariyya that Hopkins had done wrong by them. Showing them the catalog from which he ordered HeLa cells, which were priced at $167 a vial, he compared the cells to crude oil and said the Lackses should be getting at least a cut of the proceeds.

Visiting Crownsville

In addition to accompanying Deborah to see her mother’s cells, Skloot had promised to help Deborah find information on her sister Elsie. The day after the visit to Lengauer’s lab, Skloot and Deborah began a weeklong trip that would take them to Crownsville,...

...

After Deborah made Skloot promise not to copy down all the information from her mother’s records—she wanted some aspects of her mother to remain private—she went back to her room. She was still agitated, however, and she appeared intermittently at Skloot’s door, making a number of excuses for her visits. The final time she summoned Skloot to the door before finally going to sleep, she’d broken out in hives from anxiety.

Skloot was able to sleep only one hour before Deborah woke her at six for the hotel’s complimentary breakfast. Once they were in the lobby, Deborah told Skloot that they were “OK.” Skloot concurred, but she wasn’t sure she believed it.

...

Immediately Deborah separated from Gary and sighed with relief. She thanked Gary, but Gary gave all the credit to God. At that moment, the rain, which had been a drizzle when Gary first embraced Deborah, suddenly became a downpour. Gary said it was a sign that the Lord had been listening.

Deborah’s Stroke

The next morning Deborah returned to Baltimore—her hives had improved, but there was still swelling around her eyes and she wanted to see her doctor.

Skloot stayed in Clover to speak to Gary about the previous day’s events. Shortly after she entered Gary’s home, he handed her a bible and commanded her to read some passages aloud. As she read, Gary told Skloot that Henrietta had been chosen by God to do his work—that she was an angel.

One of the passages referenced the mortality of the physical body and the immortality of the spiritual body. Skloot asked Gary if he thought HeLa was Henrietta’s spiritual body and he nodded. And Skloot suddenly realized how and why some in the Lacks family believed Henrietta was an immortal being anointed by God. Counter-intuitively, that explanation was much simpler than the one McKusick—or any other scientist or doctor—had...

...

Deborah’s Final Days

In 2009, eight years after Deborah’s stroke, Skloot drove to Clover. When she got there, she found she was disoriented—the road into town seemed longer than it had the last time she visited. All of a sudden she realized what had happened: The town had been razed. She collected some of the debris from the vanished houses to give to Deborah.

Skloot hadn’t been in touch with Deborah for months, though Skloot had called her a number of times. In the years since the baptism, the Lackses had endured considerable hardship: Sonny had a quintuple bypass without insurance, a surgery that landed him $125,000 in debt; Zakariyya had been expelled from his assisted-living facility and a Section Eight housing project, the latter because he struck a woman with a forty-ounce beer bottle; and Deborah had divorced Pullum and moved into an assisted-living facility herself. In 2006, when Deborah’s divorce was finalized, she had no money in her checking account, and her entire monthly income was $742: $732 from social security and $10 in food stamps.

When Skloot returned from Clover, she called Deborah again and found her voicemail box full. Clover’s disappearance...

...

Afterword

Skloot is often asked whether Gey’s taking of Henrietta’s cells without consent was illegal. It wasn’t in 1951—and, as of 2009, it still wasn’t.

When Americans go to the doctor to have blood drawn, a mole removed, or any sort of “ectomy” (i.e., tissue or organs excised), it’s perfectly legal for doctors and hospitals to keep samples of that tissue for research. A 1999 study from the RAND Corporation estimated that tissue from more than 178 million Americans was stored in the US and that the library of tissues was growing by more than 20 million samples a year. The samples are stored in a number of places—hospitals, laboratories, federal agencies, military facilities—and include everything from appendixes to blood to fat cells to foreskins from circumcisions.

And the tissue industry is only growing. For example, 23andMe, the company that provides customers with genealogical information based on a saliva sample, will only analyze samples if the customer agrees to allow their samples to be used for further research.

In the debate over people’s rights to their tissues, there are two issues of prime importance: consent and remuneration.

...