This reminds me of Daniel Graystone using the virtual DNA of his daughter
Amanda ("Caprica") and the ethical questions involved therein. Devastating
story.
~(no)rave!
www.chicagotribune.com/news/opinion/ct-perspec-0207-henrietta-20100205,0,4616234.story
chicagotribune.com
Immortal, yet invisible
Why we are all indebted to a little-known black woman who died in the 1950s
By Deborah L. Shelton
February 6, 2010
I am Henrietta Lacks.
That's not my name, and we are not the same person. But I feel a deep
connection to Lacks, a poor black woman from rural Virginia who died almost 60
years ago. In many ways, I am her.
Chances are, you've never heard of Lacks, which is one of the many injustices
in her heartbreaking story.
Virtually all of us have benefited in some way from her immense contributions
to science and medicine. Research using Lacks' cells was essential to
developing the polio vaccine, in-vitro fertilization, cloning and gene mapping.
They aided scientists to better understand the workings of cancer and countless
viruses and were used to develop drugs for herpes, leukemia, influenza,
hemophilia and Parkinson's disease.
Before HeLa the name comes from the first two letters of her first and last
name scientists struggled to culture human cells, often failing. But HeLa
cells multiplied quickly and easily and didn't die. Scientists refer to them as
immortal. HeLa became the first immortal human cells ever grown in a laboratory.
Today, those cells constitute the most widely used cell line in labs worldwide
and have been bought and sold by the billions. They launched a medical
revolution and a multimillion-dollar industry.
I recently read about Lacks in an intriguing new book, "The Immortal Life of
Henrietta Lacks," by science writer Rebecca Skloot. It was difficult to sort
through my emotions as I soaked up every word of the carefully researched and
masterfully written book. As an African-American woman, I swelled with pride
over Lack's contributions to humanity. I also felt a fiery rage. Lacks' story
is tragic on so many levels.
Doctors at Johns Hopkins Hospital in Baltimore didn't get informed consent to
research tissue they sliced from her cervix as she battled a vicious form of
cervical cancer. Treated at Hopkins because it was the only hospital for miles
that treated black patients, she died an excruciating death in a segregated
ward at the tragically young age of 31.
She left behind five young children. To this day, her body lays buried in an
unmarked grave.
Lacks' husband and children did not know about the existence of her cells for
more than 20 years after her death, finding out through sheer serendipity.
Despite the fortune made by biotech companies from HeLa cells, members of her
family didn't see a penny. Today, many of her descendants cannot afford health
insurance.
The Lacks children were shocked to learn years later that her cells were still
alive. They had no idea what that meant. Were there bits and pieces of their
beloved mother stored in freezers around the world? Were cloned versions of her
walking the Earth? Could she one day be brought back to life? Officials at
Hopkins felt no moral obligation to explain it to them.
Scientists repeatedly exploited the Lacks family, taking tissue samples from
Lacks before and after her death and later collecting blood samples from her
offspring by misleading them about what they were doing.
Racism permeates this troubling tale, which is just one ugly chapter in medical
science's sordid history of conducting unethical experimentation on black
people.
During slavery, doctors tested drugs and operated on black people to develop
new treatments and surgical techniques. In the 1900s, black corpses were
routinely exhumed and shipped to medical schools for research. Black men died
unnecessary deaths in Alabama so scientists could study the effects of their
untreated disease in the Tuskegee Syphilis Study. Those are just a few shameful
examples.
But upholding ethics in science is important to all of us. What rights do
patients have over tissue removed from their bodies? Who owns it? And who gets
to profit from it?
The answers are not as clear-cut as you might think.
In 2008, the U.S. Supreme Court sided with Washington University in St. Louis
in a fight with a prominent researcher over who owned human cancer tissue.
Thousands of patients gave lab specimens to prostate cancer researcher Dr.
William J. Catalona before he left Washington University and moved to
Northwestern University in 2003. The 8th U.S. Circuit Court of Appeals in St.
Louis and a district judge had ruled earlier that the patients had relinquished
all rights to their tissue.
A current case pits the American Society for Clinical Pathology, the American
Civil Liberties Union and other groups against Myriad Genetics, the company
that holds the patent on BRCA1 and BRCA2, the genes responsible for two
hereditary forms of breast cancer. The groups are suing because they say the
Myriad Genetics patent severely limits independent research on the genes and
the cancers they cause.
In the rush to find new treatments and cures and yes, profits doctors and
scientists would do well to remember the ultimate goal of their work, to help
people. We should never forget our shared humanity. That's why I am Henrietta
Lacks. You are too.
Henrietta Lacks was not just a collection of cells. She was a walnut-eyed,
square-jawed beauty who favored polished red fingernails and toenails. And
sadly, she lived a hard, short life.
It's only fair that we salute her for the scientific contributions she made,
understanding that it was a role she never asked for. She just wanted to live.
Deborah L. Shelton is a health reporter for the Chicago Tribune.
For more stories about African-Americans, go to chicagotribune.com/blackhistory
Copyright © 2010, Chicago Tribune
