The Immortal Life of Henrietta Lacks (26 page)

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:

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.”

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.

It was the winter of 1975, the streets were icy, and on his way to Lawrence’s house, Rogers’s taxi was hit by another car in the middle of an intersection. The cab spun in the road, doing five, then six full circles, as if some giant hand had reached down and spun it like a bottle. Rogers had done risky reporting all over the world; now he was sitting in the back of a cab, gripping the door handle, thinking,
Damn it! It would be really stupid if I got killed in Baltimore working on
this
of all assignments. It’s not even a dangerous story!

Decades later, as I talked with Rogers in his Brooklyn apartment, we agreed, only half joking, that the spinning cab was probably no accident. Deborah would later say that it was Henrietta warning him to leave her family alone, because he was about to tell them something upsetting. She’d also say that Henrietta started the famous Oakland, California, fire that later burned Rogers’s house, destroying all the notes and documents he’d collected about HeLa and Henrietta’s family.

When Rogers made it to Lawrence’s house, he expected to interview the Lackses about Henrietta, but found himself bombarded with questions instead.

“It was so clear they hadn’t been treated well,” Rogers told me. “They truly had
no
idea what was going on, and they really wanted to understand. But doctors just took blood samples without explaining anything and left the family worrying.”

Lawrence asked, “What I was wondering was, about these cells … They say they’re stronger, they’re taking over—is that bad or good? Does that mean if we get sick, we’ll live longer?”

Rogers told the Lackses that no, the cells being immortal didn’t mean they’d become immortal too, or that they’d die of cancer. But he wasn’t sure they believed him. He explained the concept of cells as
best he could, told them about the media reports that had already appeared about HeLa, and promised he’d send them copies to read.

At that point no one in Henrietta’s immediate family except Debo rah seemed particularly upset about Henrietta’s story or the existence of those cells.

“I didn’t feel too much about the cells when I first found they was livin,” Sonny told me years later. “Long as it’s helpin somebody. That’s what I thought.”

But that changed when he and his brothers read Rogers’s article and learned this:

With that paragraph, suddenly the Lacks brothers became very interested in the story of HeLa. They also became convinced that George Gey and Johns Hopkins had stolen their mother’s cells and made millions selling them.

But in fact, Gey’s history indicates that he wasn’t particularly interested in science for profit: in the early 1940s he’d turned down a request to create and run the first commercial cell-culture lab. Patenting cell lines is standard today, but it was unheard of in the fifties; regardless, it seems unlikely that Gey would have patented HeLa. He didn’t even patent the roller drum, which is still used today and could have made him a fortune.

In the end, Gey made a comfortable salary from Hopkins, but he wasn’t wealthy. He and Margaret lived in a modest home that he bought from a friend for a one-dollar down payment, then spent years fixing up and paying off. Margaret ran the Gey lab for more than a decade without pay. Sometimes she couldn’t make their house payments
or buy groceries because George had drained their account yet again buying lab equipment they couldn’t afford. Eventually she made him open a separate checking account for the lab, and kept him away from their personal money as much as she could. On their thirtieth wedding anniversary, George gave Margaret a check for one hundred dollars, along with a note scribbled on the back of an aluminum oxide wrapper: “Next 30 years not as rough. Love, George.” Margaret never cashed the check, and things never got much better.