The Immortal Life of Henrietta Lacks (26 page)

     
A
fter Day got off the phone with Hsu, he called Lawrence, Sonny, and Deborah, saying, “You got to come over to the house tomorrow, doctors from Hopkins coming to test everybody’s blood to see if you all got that cancer your mother had.”

When Henrietta died, Day had agreed to let her doctors do an autopsy because they’d told him it might help his children someday.
They must have been telling the truth
, Day thought. Zakariyya was in Henrietta’s womb when she first got the cancer, and he’d had all those anger problems ever since. Now Deborah was almost twenty-four, not much younger than Henrietta had been when she died. It made sense they were calling saying it was time for her to get tested.

Deborah panicked. She knew her mother had gotten sick at thirty, so she’d long feared her own thirtieth birthday, figuring that whatever happened to her mother at that age would happen to her too. And Deborah couldn’t stand the idea of her own children growing up motherless like she had. At that point, LaTonya was two, Alfred was six, and Cheetah had never paid child support. Deborah had tried welfare for three months but hated it, so now she was working days at a suburban Toys “R” Us that took more than an hour and three buses to get to, then nights at a hamburger place called Gino’s behind her apartment.

Since Deborah couldn’t afford a babysitter, her boss at Gino’s let Tonya and Alfred sit in the corner of the restaurant at night while Deborah worked. On her eight-thirty dinner break, Deborah would run behind the building to her apartment and put the children to bed. They knew not to open the door unless they heard her secret knock, and they never put the kerosene lamps near a curtain or blanket. Deborah practiced fire drills with them in case something went wrong while she was at work, teaching them to crawl to the window, throw out a sheet-rope she kept tied to the bed leg, and climb to safety.

Those children were all Deborah had, and she wasn’t going to let anything happen to them. So when her father called saying Hopkins wanted to test to see if she had her mother’s cancer, Deborah sobbed, saying, “Lord don’t take me away from my babies, not now, not after everything we been through.”

A few days after Susan Hsu’s phone call, Day, Sonny, Lawrence, and Deborah all sat around Lawrence’s dining room table as Hsu and a doctor from McKusick’s lab collected tubes of blood from each of them.

For the next several days, Deborah called Hopkins again and again, telling the switchboard operators, “I’m calling for my cancer results.” But none of the operators knew what tests she was talking about, or where to send her for help.

Soon, Hsu wrote a letter to Lawrence asking if she could send a nurse out to Hagerstown to collect samples from Zakariyya in prison. She included a copy of the George Gey tribute written by McKusick and Jones, saying she thought Lawrence would like to see an article about his mother’s cells. No one in the family remembers reading that article—they figure Lawrence just put it in a drawer and forgot about it.

The Lacks men didn’t think much about their mother’s cells or the cancer tests. Lawrence was working full-time on the railroad and living in a house filled with children, Zakariyya was still in jail, and times had gotten tough for Sonny, who was now busy selling drugs.

But Deborah couldn’t stop worrying. She was terrified that she might have cancer, and consumed with the idea that researchers had done—and were perhaps still doing—horrible things to her mother. She’d heard the stories about Hopkins snatching black people for research, and she’d read an article in
Jet
about the Tuskegee study that suggested doctors might have actually injected those men with syphilis in order to study them. “The injection of disease-causing organisms into unaware human subjects has occurred before in American medical science,” the article explained. “It was done eight years ago in New York City by Dr. Chester Southam, a cancer specialist who injected live cancer cells into chronically ill elderly patients.”

Deborah started wondering if instead of testing the Lacks children for cancer, McKusick and Hsu were actually injecting them with the same bad blood that had killed their mother. She started asking Day a lot of questions about Henrietta: How’d she get sick? What happened when she died? What did those doctors do to her? The answers seemed to confirm her fears: Day told her that Henrietta hadn’t seemed sick at all. He said he took her into Hopkins, they started doing treatments, then her stomach turned black as coal and she died. Sadie said the same thing, and so did all the other cousins. But when she asked what kind of cancer her mother had, what treatments the doctors gave her, and what part of her was still alive, the family had no answers.

So when one of McKusick’s assistants called Deborah and asked her to come into Hopkins to give more blood, she went, thinking that if her family couldn’t answer questions about her mother, maybe the scientists could. She didn’t know the blood was for a researcher in California who wanted some samples for his own HeLa research, and she didn’t know why McKusick’s assistant was calling her and not her brothers—she figured it was because the problem her mother had didn’t affect boys. She still thought she was being tested for cancer.

     
D
eborah went into McKusick’s office to give more blood on June 26, 1974, four days before the new federal law went into effect requiring IRB approval and informed consent for all federally funded research. The new law—published in the
Federal Register
one month earlier—applied to all “subjects at risk,” meaning “any individual who may be exposed to the possibility of injury, including physical, psychological, or social injury, as a consequence of participation as a subject.” But what constituted “injury” and “risk” was heavily debated. Numerous researchers had appealed to HEW, asking that collection of blood and tissues be exempt from the new law. After all, doctors had been drawing blood for centuries for diagnostic testing, and aside from the pain of a needle stick, there seemed to be no risk. But HEW did not exempt those procedures; in fact, it later clarified the law to specifically include them.

McKusick’s research on the Lacks family coincided with the beginning of a new era of genetic research, in which the concept of risk to patients would change completely. With the ability to identify genes from a blood sample or even a single cell, the risk of a blood draw was no longer just a minor infection or the pain of a needle stick—it was that someone could uncover your genetic information. It was about violation of privacy.

Deborah met McKusick only once, when she went into Hopkins to give blood. He shook her hand and said that Henrietta had made an important contribution to science. Then Deborah bombarded him with questions: What made her mother sick? How was part of her still living? What did that mean? What did Henrietta do for science? And did all those blood tests he was doing mean Deborah was going to die young like her mother?

McKusick did not explain why he was having someone draw blood from Deborah. Instead he told her about Henrietta’s cells being used for the polio vaccine and genetic research; he said they’d gone up in early space missions and been used in atomic bomb testing. Deborah heard those things and imagined her mother on the moon and being blown up by bombs. She was terrified and couldn’t stop wondering if the parts of her mother they were using in research could actually feel the things scientists were doing to them.

When she asked McKusick to explain more about the cells, he gave her a book he’d edited called
Medical Genetics
, which would become one of the most important textbooks in the field. He said it would tell her everything she needed to know, then autographed the inside front cover. Beneath his signature he wrote a phone number and told her to use it for making appointments to give more blood.

McKusick flipped to the second page of the introduction. There, between graphs of “Disease Specific Infant Mortality” and a description of “the homozygous state of Garrodian inborn errors,” was the photograph of Henrietta with her hands on her hips. He pointed to the paragraph that mentioned her:

Parenthetically, medical geneticists making use of the study of cells in place of the whole patient have “cashed in” on a reservoir of morphologic, biochemical, and other information in cell biology derived in no small part from study of the famous cell line cultured from the patient pictured on this page, Henrietta Lacks.

The book was filled with complicated sentences explaining Henrietta’s cells by saying, “its atypical histology may correlate with the unusually malignant behavior of the carcinoma,” and something about the “correlate of the tumor’s singularity.”

Reading magazines took Deborah a long time because she had to stop often to look words up in her dictionary. Now she sat in the clinic gripping McKusick’s book, not even trying to read the words. All she could think was that she’d never seen that photograph of her mother before.
What happened to her to make her end up in there?
she wondered.
And how did he get that picture?
Day swore he’d never given it to McKusick or any of Henrietta’s doctors; Deborah’s brothers swore they hadn’t either. The only thing Day could figure was that maybe Howard Jones had asked Henrietta for a picture, then stuck it in her medical record. But as far as Day knew, no one had ever asked permission to publish it.

When I talked to McKusick several years before his death in 2008, he was seventy-nine and still conducting research and training young scientists. He didn’t recall where he’d gotten the photo, but he imagined Henrietta’s family must have given it to Howard Jones or another doctor at Hopkins. Though McKusick remembered the research he conducted on the Lacks family, he didn’t remember meeting Deborah or giving her his book, and said he’d never had firsthand contact with the family. He’d left that up to Hsu.

When I talked to Susan Hsu, now a director of medical genetics at the American Red Cross, she told me that working with McKusick on HeLa cells was a highlight of her career. “I’m very proud,” she told me. “I probably will Xerox these paper and tell my kids this is important.” But when I explained to her that the Lackses thought she was testing them for cancer, and that they were upset about scientists using the cells without their knowledge, she was shocked.

“I feel very bad,” she said. “People should have told them. You know, we never thought at that time they did not understand.”

She also told me she had a message she hoped I’d give to the Lacks family when I talked with them next: “Just tell them I’m really grateful,” she said. “They should be very proud of the mother or the wife—I think that if they are angry probably they didn’t realize how famous the cells are now in the world. It’s unfortunate thing what happened, they still should be very proud, their mother will never die as long as the medical science is around, she will always be such a famous thing.”

Toward the end of our conversation, Hsu mentioned that she could learn much more from testing the family’s blood today, since DNA technology had advanced so much since the seventies. Then she asked if I’d tell the Lacks family one more thing for her: “If they are willing,” she said, “I wouldn’t mind to go back and get some more blood.”

24
“Least They Can Do”

T
he Lackses didn’t know anything about the HeLa contamination problem that led McKusick and Hsu to them until Michael Rogers, a young reporter for
Rolling Stone
, showed up at their house with long hair and rock-and-roll clothes.

Rogers was something of a journalism prodigy. By his nineteenth birthday he’d gotten a degree in creative writing and physics and published his first story in
Esquire;
by his early twenties, when he started looking into the HeLa story, he’d already published two books and joined the staff of
Rolling Stone
. In coming years he’d go on to be an editor at
Newsweek
, and later the
Washington Post
.

Rogers first learned about HeLa cells after seeing “Helen Lane Lives!” written over a urinal in a medical school bathroom. He started reading news reports about HeLa cells and the contamination problem and realized it would make a great story for
Rolling Stone—
the perfect mix of science and human interest. So Rogers set out to find this mysterious Helen Lane.

He called Margaret Gey, who was friendly and talkative until Rogers asked about Helen Lane. Then she told him it wouldn’t be a good idea for them to meet and hung up. Eventually Rogers found his way to Walter Nelson-Rees, who mentioned as an aside that Henrietta Lacks was the real name of the woman behind the cells. Soon, while sitting on his Baltimore hotel bed with the view of the B-R-O-M-O-S-E-L-T-Z-E-R clock, Rogers found Lawrence Lacks in the phone book.