Henrietta's cells were, and still are, some of the strongest cells known to
science--they reproduce an entire generation every 24 hours. This strength provided
a research workhorse to irradiate, poison, and manipulate without inflicting
harm.
Photo by Alan Mason Chesney Medical Archives "The [only thing] I heard
about it was, she had that cancer," David Lacks says. "They called
me, said come up there because she died. They asked me to let them take samples,
and I decided not to let them do it." But the researchers told Lacks they
could use his wife's cells to study cancer. Something that might strike his
family again someday. Their studies might someday help his children and his
grandchildren. Lacks was skeptical. But, he thought, if they want to see how
my wife's cancer might affect our children, and get ready to treat them if they
get sick, I guess that might be okay. "My cousins said it wouldn't hurt,
so eventually I let them do it. The [doctors said] it was the fastest growing
cancer they'd ever known, and they were supposed to tell me about it, to let
me know, but I never did hear."
He didn't hear, that is, until a hazy day in 1975, 24 years after Henrietta's
death, when his daughter-in-law went to a friend's house for dinner.
In a two-story brown-brick townhouse in Baltimore, five doors down from her
home, Barbara Lacks, the wife of Henrietta's eldest son, Lawrence, sat down
for dinner at her friend Jasmine's house. The two women had been friends for
years, but Barbara had never met Jasmine's sister or brother-in-law, who came
all the way from D.C. for dinner. They gathered around the mahogany table, surrounded
by plants and soft light, and Jackson, Jasmine's brother-in-law, looked across
the table at Barbara.
"You know," he said, "your name sounds so familiar." Jackson
was a scientist who spent his days in a Washington laboratory. "I think
I know what it is. . .I've been working with some cells in my lab; they're from
a woman called Henrietta Lacks. Are you related?"
"That's my mother-in-law," Barbara whispered, shaking her head. "She's
been dead almost 25 years, what do you mean you're working with her cells?"
Jackson explained. The cells, he told her, had been alive since Henrietta's
death and were all around the world. Actually, by that time, they were standard
reference cells--few molecular scientists hadn't worked with them. Barbara excused
herself, thanking him, promising she would be in touch, and ran home to tell
her husband what she'd heard. Your mother's cells, she told him, they're alive.
Lawrence called his father who called his brothers and his sister. They just
couldn't understand. "The question I really had," says Barbara, "the
question I kept asking Jackson was, I wonder why they never mentioned anything
to the family. They knew how to contact us." But, since no one had called
in the two decades after Henrietta's death, instead of continuing to wonder,
the Lacks family got on the phone and rang Hopkins themselves. And they did
it at an opportune time. Henrietta's cells, it turned out, had grown out of
control. Some scientists thought her relatives were the only people who could
help.
Henrietta's cells were, and still are, some of the strongest cells known to
science--they reproduce an entire generation every 24 hours. "If allowed
to grow uninhibited," Howard Jones and his Hopkins colleagues said in 1971,
"[HeLa cells] would have taken over the world by this time." This
strength provided a research workhorse to irradiate, poison, and manipulate
without inflicting harm; but it also meant research labs were only big enough
for one culture: HeLa.
Though it took three decades for the Geys to succeed with their efforts to create
a human cell line, after their success with HeLa, culturing cells became suspiciously
easy. Researchers cultivated tissue samples from their own bodies and the bodies
of their families and patients. Most grew successfully. Sure, the samples struggled
during the first few weeks, or even months, in culture, but then, suddenly,
they flourished. Samples blossomed into full-blown healthy cell lines with the
strength of, well, the HeLa cell.
In 1974, a researcher by the name of Walter Nelson-Rees started what everyone
called a nasty rumor: HeLa cells, he claimed, had infiltrated the world's stock
of cell cultures. No one wanted to believe him. For almost three decades researchers
had done complex experiments on what they thought were breast cells, prostate
cells, or placental cells, and suddenly, rumor had it they'd been working with
HeLa cells all along. To believe this would be to believe that years of work
and millions of dollars had, in essence, been wasted.
The truth was, Henrietta's cells had traveled through the air, on hands, or
the tips of pipettes, overpowering any cell cultures they encountered. And researchers
had no idea. There was no way to know which cells were growing in the petri
dish. And there was no universally accepted test for a cell culture's identity.
To accept or reject the theory that HeLa cells had taken over, researchers wanted
more evidence. This required detailed information about the cells' source. But
they knew only the barest facts about Henrietta: She was black, she was a woman,
and she was dead.
Though it may have been coincidence, soon after the Lacks children called Hopkins
asking about their mother's cells, letters appeared in their mailboxes. Several
Hopkins researchers wondered, the letters said, if the Lacks family would be
willing to donate some blood and tissue samples. Soon, a nurse circled Barbara
Lacks's narrow dining room table with needles, blood tubes, and slides, gathering
samples from the Lackses. From these donations, researchers would find precious
bits of information about Henrietta--like her blood type--that they could use
in their attempts to study her cells.
"[It was] an elegant piece of work," Nelson-Rees told a reporter,
"by simple Aristotelian class logic and pure applied genetics, you could
speculate, to a remarkable extent, as to what Henrietta Lacks's [genetic makeup]
was." And this is exactly what the researchers did. But if you ask the
family, you'll get a different story.
"The doctors tested us to see what was in my mother's system, was it hereditary,"
recalls Henrietta's son Sonny Lacks. "But that's all they said. They never
got in contact with us again. We contacted them a couple a times, but they said
they'd get back at us, then after a while, we just got tired of calling, so
everybody just let it go and went back with their lives." But every now
and then, they wonder if they have the gene that killed their mother.
This point of confusion between what the researchers intended to do with the
samples and what the participants understood their intentions to be is only
one of several elements of the Lackses' story that points to important ethical
questions. Some have yet to find answers.
"There are at least two issues that cases like Mrs. Lacks's raise,"
says Ruth Faden, executive director of the Johns Hopkins Bioethics Institute
and the Philip Franklin Wagley Professor of Biomedical Ethics. "One is
the question of consent, and the other is what, if anything, is morally or legally
due to a person if something of commercial value is developed from their cells."
In terms of informed consent, says Faden, "the Lackses' story is a sad
commentary on how the biomedical research community thought about research in
the 1950s. But it was not at all uncommon for physicians to conduct research
on patients without their knowledge or consent. That doesn't make it right.
It certainly wasn't right. It was also unfortunately common." Since the
era when Henrietta walked through the doors of Hopkins, the field of biomedical
ethics was born, and with it came regulations about informed consent. Patients
now have something like a legal promise that no physician will take samples
without permission. It's the latter issue, the commodification of human body
parts, which is still an extremely unsettled area of ethics and law in public
policy. And for the Lackses, who don't all have health insurance or the money
to afford it, the issue of commercial value in this case is very unsettled.
Unsettled, but with little recourse.
Since the development of the HeLa cells, there's been an explosion of both scientific
and commercial interest in the use of human tissues for research purposes, yet
research subjects generally see none of the returns. "The amazing thing,"
says Faden, "is that here we are, almost 50 years later, the capacity to
develop commercial products from human tissues is dramatically greater now than
it was then, and we still haven't figured out how to handle it. . . . In terms
of public policy, we're real clear that you can't buy and sell organs, that's
illegal. But you can sell blood. You can sell human eggs and sperm. But you
can't sell your kidney. And apparently, you can't sell your cells, you give
those away. So, nothing is very clear, and there are a lot of deep worries about
putting price tags on the human body." This is partially why the United
States has recently launched a Presidential Bioethics Advisory Commission to
address this and related issues.
To this day, members of the Lacks family feel they've been passed over in the
story of the HeLa cells. They know their mother's cells started a medical revolution
and are now bought and sold around the world. They're pretty sure that someone,
somewhere, has profited from their mother's death. They know that someone wasn't
related to Henrietta. And their experience is not well-known. In cases like
these, Faden agrees, a good way to begin addressing this problem is through
the telling of a story from which everyone can learn. This story starts with
Henrietta and the origin of the HeLa cells: They were not from Helen Lane or
Helen Larson, as many publications have mistakenly reported, they were from
Henrietta Lacks, wife of David, mother of five.
Not long before his death, Walter Nelson-Rees, who devoted his career to containing
the spread of HeLa cells, sat in a small chair in front of a television camera.
He leaned forward, lifted his arms, and said, "HeLa will live forever,
perhaps." And then he paused, staring wistfully ahead. "The dance
of HeLa continues," he said, "they're all dancing out there somewhere...
the stage is very broad and wide, and the curtain has by no means gone down
on them. The music plays on." And somewhere, with freshly painted toenails
and curlers in her hair, perhaps Henrietta dances with them.
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