The Immortal Life Of Henrietta Lacks Part 22

McKusick and Hsu were hoping to use somatic-cell hybridization to test the Lacks family for several different genetic markers, including specific proteins called HLA markers. By testing Henrietta's children, they hoped to find out what Henrietta's HLA markers might have been, so they could use those to identify her cells.

Hsu had only recently come to America from China, and English wasn't her native language. According to Hsu, when she called Day in 1973, she told him this: "We come to draw blood to get HLA antigen, we do genetic marker profile because we can deduce a lot of Henrietta Lacks genotype from the children and the husband."

When I asked her if Day seemed to understand, Hsu said, "They are very receptible to us when I made phone call. They are pretty intelligent. I think Mr. Lacks pretty much already knew that his wife made a contribution and are very aware of the value of HeLa cells. They probably heard people talking that the cell line is such important thing. Everybody talking about HeLa back then. They are a very nice family, so they very nicely let us draw blood."

Hsu's accent was strong, and so was Day's-he spoke with a Southern country drawl so thick his own children often had a hard time understanding him. But language wasn't their only barrier. 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.

Years later, when I asked McKusick if anyone had tried to get informed consent from the Lacks family, he said, "I suspect there was no effort to explain anything in great detail. But I don't believe anyone would have told them we were testing for cancer because that wasn't the case. They would have just said, 'Your mother had cancer, the cells from that cancer have been growing all over the place and studied in great detail, in order to understand that better, we would like to have that blood from you people.' "

When I asked Susan Hsu the same question she said, "No. We never gave consent form because you just go to draw blood. We are not doing some kind of medical research, you know, not long term. All we wanted is a few tubes of blood and to do genetic marker test. It's not involved in a human research committee or things like that."

Although this att.i.tude wasn't uncommon at the time, NIH guidelines stipulated that all human subject research funded by NIH-as McKusick's was-required both informed consent and approval from a Hopkins review board. Those guidelines had been implemented in 1966, in the aftermath of the Southam trial, and then expanded to include a detailed definition of informed consent in 1971. They were in the process of being codified into law when Hsu called Day.

McKusick began his research on the Lacks family at a time of great flux in research oversight. Just one year earlier, in response to Tuskegee and several other unethical studies, the Department of Health, Education, and Welfare (HEW) had launched an investigation into federal oversight of human-subject research and found it to be inadequate. As one government report said, it was a time filled with "widespread confusion about how to a.s.sess risk," as well as "refusal by some researchers to cooperate" with oversight, and "indifference by those charged with administering research and its rules at local inst.i.tutions." After halting the Tuskegee study, HEW proposed new Protection of Human Subjects regulations that would require, among other things, informed consent. A notice inviting public comment on that proposed new law would be published in the Federal Register in October 1973, just a few months after Hsu called Day.

After 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 s.n.a.t.c.hing 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 a.s.sistants 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 a.s.sistant 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.

Deborah 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 partic.i.p.ation as a subject." But what const.i.tuted "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 s.p.a.ce 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 h.o.m.ozygous 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."

CHAPTER 24

"Least They Can Do"

The 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. .h.i.t 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, d.a.m.n it! It would be really stupid if I got killed in Baltimore working on this of all a.s.signments. 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 doc.u.ments 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 Deborah 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."