Rebecca Skloot
In 1951 in Baltimore, a young black woman named Henrietta Lacks went to Johns Hopkins Hospital (one of the few hospitals that would treat black people), was diagnosed with cervical cancer, and started to receive radiation treatment. In those days the radiation wasn't delivered from the outside; rather, the radium was inserted and sewn into the affected area. In fact, this was the treatment my mother received about that same time.
Before
inserting the radium, the surgeon cut two dime-sized samples from the cervix,
one of cancerous tissue and one of non-affected tissue. These samples were sent
to the lab where Dr. George Gey had been trying, unsuccessfully, to grow human
tissues in a culture medium. Although Henrietta died from her cancer,
Henrietta's cells thrived and grew. These were the first human cells to grow in
the lab, and the strain was named HeLa.
HeLa
cells grew so aggressively that Gey was soon shipping the cells out to other
labs around the world for free. Soon demand was outpacing his ability to
supply. A company was set up which started to provide the cells commercially.
Eventually, experimenters were able to grow cells from other donors too, but
HeLa was the most prolific strain by far.
As the
business of providing cells for experimentation grew, the American Type Culture
Collection (ATCC) was established as a central storage facility for pure
original cells from all different strains. However, despite the ATCC, cell
purity was not maintained. A shocking analysis showed that the HeLa strain was
so aggressive that if a different culture was contaminated by any HeLa cells,
the other cells would die out and HeLa would take over. Thus the vast majority
of research around the world had been carried out on HeLa cells, even when the
researchers thought they were working with another strain. This showed just how
incredibly unusual and prolific HeLa cells were and put into question many
research results.
Meanwhile,
the Lacks family knew nothing about their mother's cells being used—revolutionizing
research and generating considerable profits—and had given no permission for
such use. The Lacks were poor, uneducated people who had escaped from the
poverty of rural Virginia to the booming factories of Baltimore during World
War II, only to be thrown back into poverty when those factories closed after
the war. When they learned of HeLa, they did not understand anything about
cells, and were prone to thinking their mother might still be suffering through
experimentation on her cells. Skloot recounts a remarkable story of Lacks’s daughter
Deborah striving to read scientific literature and gain a sufficient
understanding of biology to appreciate what had been going on. A visit to a lab
where she saw her mother's cells under a microscope was a truly amazing
epiphany for her.
Skloot
also traces the history of the concept of informed consent and points out that
tissue removed from people to this day is available for hospitals to use for
research, based on the consent form for the operation. There are many current
examples of tissues being used for purposes for which informed consent was not
acquired. For instance, members of the Havasupai tribe in Arizona donated DNA
to the University of Arizona on the understanding that it would be used to
study diabetes, a condition that was very common within the tribe. However, the
DNA was instead used to study schizophrenia and inbreeding. The tribe sued and
later reached a settlement with the University.
The
history of medical research and the black community is particularly ugly. In
the 1950s, black people were simply treated differently by the medical system.
Johns Hopkins was notable for even admitting blacks, but they were relegated to
a special “coloured section.” The now-infamous Tuskegee syphilis study recruited
African American men with syphilis for a study of the disease and then denied
them treatment even after it was known that penicillin would cure it. Even in
the 1960s black women were being sterilized in Mississippi through involuntary
hysterectomies, sarcastically labeled “Mississippi Appendectomies.”
Rebecca
Skloot, the author of The Immortal Life
of Henrietta Lacks, spent years tracking down the Lacks family (early
reports had said HeLa cells came from Helen Lane), and gaining enough of their
trust to get detailed information and actual records to present the story.
I highly
recommend this book. It's a remarkable story and provides food for thought on
so many levels.
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