Henrietta Lacks: The True Heroine of HBO’s Latest Movie, Starring Oprah | NBC4 Washington

Henrietta Lacks: The True Heroine of HBO’s Latest Movie, Starring Oprah

The bestselling non-fiction book about Henrietta Lacks, whose cells transformed the field of medicine, has now been made into a movie

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    NEWSLETTERS

    Henrietta Lacks: The True Heroine of HBO’s Latest Movie, Starring Oprah
    Lacks Family / Tom Deerinck / Getty Images
    Henrietta Lacks (left) died in 1951 from cervical cancer, but her cells, called "HeLa cells" (center) are still used in research today. Oprah Winfrey plays Lacks' daughter, Deborah Lacks, in an HBO movie about the woman that changed modern medicine.

    What to Know

    • From countless medical advancements to a family torn apart, the story of Henrietta Lacks' cells is multi-faceted.

    • HeLa cells have helped in eliminating polio, developing IVF, and creating cancer drugs and the HPV vaccine.

    • The way in which Lacks' cells were taken and the lack of transparency with her family is in conflict with current ethical standards.

    When Oprah Winfrey signs her name to something, it captures attention far and wide. Her latest project is no exception.

    Winfrey stars Saturday in HBO's "The Immortal Life of Henrietta Lacks," a movie based on the national bestseller that tells the real story of a woman whose cervical cancer cells propelled advancements in medical research.

    "I was really like, how could I have been a reporter all those years and never heard of HeLa cells and never heard the name Henrietta Lacks?" Winfrey, who was once a reporter in Baltimore, told NBC News.

    From countless medical advancements to a family torn apart, the story of Henrietta Lacks' cells is multi-faceted.

    Below are six things to know about Henrietta Lacks' contribution to science ahead of the HBO premiere.

    Henrietta Lacks (HeLa)

    Henrietta Lacks was a 31-year-old African American mother of five from rural southern Virginia. She died in 1951 after being diagnosed with cervical cancer at Johns Hopkins in Baltimore.

    As told in Rebecca Skloot's bestseller, doctors took her cells without her knowing during her cancer treatment and discovered the cancer cells' remarkable ability to keep growing -- something that had never been seen before. They called them HeLa cells for the first two letters of her first and last name.

    Immortal Cells

    As the title of the book and movie implies, Lacks lives on through her cells that continue to grow in laboratories to this day.

    For decades, scientists grew and sold HeLa cells around the world, but didn't know why or how her cancer cells managed to replicate and thrive.

    In the 1980s, German virologist Harald zur Hausen discovered the cells had human papillomavirus or HPV. HeLa cells contain a strain of the virus which doctors now know can cause cervical cancer.

    Two HPV genes in HeLa cells are what allow them to keep growing and growing, according to Dr. Richard Schlegel, the chair of Georgetown University's Department of Pathology.

    "If you turn off those two genes in that cell, the cell stops growing. It doesn't form tumors anymore," Schlegel said.

    HeLa cells are the oldest and most commonly used cell line and the "workhorse" cells, as Skloot called them, are so hardy that they are known to sometimes contaminate experiments.

    "It's a very durable cell line. It's very easy to grow. It's almost like the equivalent of a weed in a lawn, you know, when the summer gets hot, your grass dies and these weeds somehow maintain themselves and that cell is like that," Schlegel said.

    Major Strides in Medicine

    Schlegel used zur Hausen's groundbreaking research on HeLa cells in developing the technology for the HPV vaccine, which now helps prevent women from dying from the same illness that took Lacks' life.

    HeLa cells have also helped in eliminating polio, developing in vitro fertilization and creating cancer drugs. Lacks' cells have traveled the globe and gone to space.

    They were critical for scientists to answer questions about basic biology, such as how cells move, DNA, RNA and protein synthesis, Schlegel said.

    "It really opened up the era of cell biology and molecular biology and understanding it at a new level," Schlegel said.

    In more recent research, scientists have found that the Zika virus cannot multiply in HeLa cells.

    A Different Era

    While HeLa cells have led to extraordinary advancements, the way in which Lacks' cells were taken and the lack of transparency with her family is in conflict with current ethical standards in medicine.

    In 1951, there was no consent required from patients.

    "Medicine was not really a business yet, it was just coming out of the 'family doctor comes with his little black bag' era," said Dr. Arthur Caplan, head of the Division of Bioethics at New York University Medical Center. "In 1951, we have no kidney dialysis, no ventilator, no heart-lung machine, no intensive care unit, almost no drugs -- much less -- no gigantic pharmaceutical companies."

    Caplan said doctors also weren't truthful with patients about their diagnosis during that time -- no matter the patient's race or economic class. Doctors often wouldn't tell patients they had cancer for fear of scaring the patient.

    "The basic idea of truthfulness with patients, much less with subjects, wasn't in place," Caplan said.

    Henrietta was informed of and underwent radiation for her aggressive cancer, but like most patients during that time, did not have a say in her cells being used for research. Her family didn't know about HeLa cells until 20 years after her death, when doctors tested the family's blood for more research. But the family didn't understand what was happening and doctors continued to withhold information.

    This lack of transparency created the distrust voiced by Deborah Lacks, Henrietta's daughter who is portrayed by Winfrey in the movie.

    Lacks Family "Torn Apart"

    "I could [cry] when I think about Deborah and hear her voice from the tapes, how eager she was to know about her mother and to have this story told," Winfrey said in an interview with NBC News.

    For decades, no one knew about the woman behind the amazing immortal cells, which is what inspired author Rebecca Skloot to tell her story. Skloot found Deborah and discovered the family of the woman whose cells led to major medical breakthroughs could not afford their own health care.

    The Lacks family was never compensated or profited from HeLa cells, although the cells have led to millions of dollars in profits as they have been sold for a myriad of studies. Johns Hopkins has said it never profited from HeLa cells, but some of Henrietta's descendants maintained they should receive payment.

    "Unfortunately some members of the family are still being torn apart... by the burden of those cells," Winfrey said.

    According to Caplan, research subjects and their families are not paid today, but one simple change has been made since the 1950s.

    "It's not different than it was for Henrietta Lacks or anybody else... But now institutions, to protect themselves, basically say, 'We're not going to pay you if something valuable is made from your cells,'" Caplan said.

    In 2013, three years after the book was published, more concerns came for the family after a group of scientists in Europe published the genetic makeup of the cells. The family was concerned that anyone who had the full genome map could learn personal medical information about them and asked for the researchers to withdraw the paper.

    After the study was withdrawn, the Lacks family met with the National Institutes of Health and came to an agreement about how to proceed with publishing information about the genome.

    Lessons Learned

    Caplan said the Lacks family will never profit from HeLa cells, but their agreement with the NIH is a major milestone in medical ethics.

    "I think they do have the right to control [the genome]… anything that identifies somebody or potentially identifies somebody -- you have the right to consent to its use or not," Caplan said.

    Out of the agreement came the HeLa Genome Working Group, which includes two representatives of the Lacks family. Those family members now choose which researchers can have access to HeLa cells.

    Meanwhile, Skloot has set up a foundation for the family using proceeds from the book and movie. The foundation provides scholarships for Lacks' descendants and health care for Henrietta's children.

    The Lacks family is still hoping that research organizations and companies that have profited from HeLa cells will do something to honor Henrietta and recognize what her family went through, according to Skloot.

    HBO's movie will premiere Saturday, April 22 at 8 p.m. Eastern Time.