Oprah Winfrey and the immortal reach of Henrietta Lacks
Deborah Lacks grew up without her mother, who died when she was only 2 years old. Her longing for details about her mother’s life is a key aspect of the new HBO film The Immortal Life of Henrietta Lacks, with Oprah Winfrey as co-star and an executive producer.
Henrietta Lacks’ life was cut short at age 31 after a debilitating bout with cervical cancer. However, her cells have lived on as a medical gift that keeps on giving—without her knowledge or consent. The film, adapted from Rebecca Skloot’s best-selling book of the same name, depicts the multiplier effect of Lacks’ cells on her family, other African Americans, science, medical ethics, and the birth of the multi-billion-dollar biotech industry.
Lacks’ family described her as loving, lively, and lovely, but they largely kept the bittersweet joys of her short life and the pain of her sudden death hidden deep inside. It’s unclear how she ended up with the name Henrietta, according to Skloot’s book. Born Loretta Pleasant on Aug. 1, 1920, she was the ninth of Eliza Lacks Pleasant and Johnny Pleasant’s 10 children.
When her mother died giving birth to the last child, her father took his brood 93 miles southeast from Roanoke to his people in Clover, Va. Four-year-old Henrietta ended up on a tobacco farm with her grandfather, Tommy Lacks. She later married cousin David Lacks, and they settled in Turner Point, a black community in Dundalk, Maryland, near Baltimore-area shipyard jobs.
A few months after the couple’s fifth child, Joseph, was born, the knot that Lacks had been feeling in her womb for some time was diagnosed as cervical cancer at Johns Hopkins, one of the few hospitals that treated black patients. That was in January 1951. By early October, Henrietta Lacks was dead. In the interim, the hospital had biopsied specimens from her nickel-sized tumor as well as healthy cervical tissue. More tissue was later extracted from her corpse.
Named for the beginning of her first and last names, the HeLa cells were growing “like crabgrass—free of charge,” boasts cell biologist George Gey, portrayed by Reed Birney, at the beginning of the HBO film. “Well, how many vials do you want?” he asks a fellow researcher on the phone.
The endless supply of HeLa cells allowed scientists to perform experiments that they couldn’t conduct on humans. The cells revolutionized science, contributing to advances in cloning, in vitro fertilization, chemotherapy, and treatments for Parkinson’s disease, AIDS, herpes, influenza, and polio. They even traveled into space on one of the first missions and yielded five Nobel Prizes for related research. No other human cells have ever been as viable in lab settings.
For a half-century, Henrietta Lacks’ family was unaware that her cells had lived on, contributing so much to so many. The revelation in a scientific journal in 1971 and Johns Hopkins’ subsequent requests for their own blood samples evoked feelings of suspicion, confusion, and being disrespected.
Skloot’s interest in writing a book drew similar reactions that still linger. However, Deborah Lacks was all in—even if inconsistently at times. She died of a heart attack in her sleep on May 12, 2009, nine months before the book was published.
“I always have thought it was strange, if our mother cells done so much for medicine, how come her family can’t afford to see no doctors? Don’t make no sense,” she said in a section of the 2010 book called Deborah’s Voice.
“People got rich off my mother without us even knowin about them takin her cells, now we don’t get a dime. I used to get so mad about that to where it made me sick and I had to take pills. But I don’t got it in me no more to fight. I just want to know who my mother was.”
Members of the public were mad, too. Like the Lacks family, other African Americans have experienced a mixture of pride that a black woman has made such significant medical history and anger over issues of medical ethics and betrayal.
The Lacks case is a reminder of the Tuskegee syphilis experiments in which black men unknowingly went untreated, all in the name of science. President Clinton issued an apology to survivors on behalf of the United States in 1997.
For Maryland residents who have had a love-hate relationship with institutional neighbor Johns Hopkins, at one time legend had it that the hospital had “night doctors” who’d snatch people off the street to do who knows what without permission. The only difference between those purported victims and Henrietta Lacks was that she came through the front door on her own steam. Some people were also disturbed to learn the story of Vivien Thomas, an African-American surgical technician who initially didn’t receive credit for his role in developing methods to treat blue baby syndrome.
For decades, these injustices have created trust issues that have made African Americans hesitant to participate in clinical trials, which require a diverse pool of research subject to address racial, ethnic, and gender disparities effectively.
The trust issues have lessened somewhat, and more African Americans are participating in clinical trials, but there’s still more work to be done, Duane A. Mitchell, M.D., Ph.D., said during a presentation over the weekend at the Association of Health Care Journalists conference in Orlando, Florida.
“Understanding the barriers is multifactorial,” said Dr. Mitchell, co-director of the Preston A. Wells Jr. Center for Brain Tumor Therapy and director of the Brain Tumor Immunotherapy Program at the University of Florida.
“I do think there are opportunities on both ends—from the provider and researcher end as well as the patient and community—to build that additional trust and explanation so that underrepresented minorities and others are more likely to participate in clinical research.”
More African Americans are interested in clinical trials to improve their health and for the greater good. For some, time off from work, child care, and transportation are barriers. Dr. Mitchell also points out a basic lack of awareness and outreach that occasionally stem from bias. Sometimes doctors and investigators just need to discuss research with patients and simply ask them about participation or permission.
According to the Food and Drug Administration’s Drug Trials Snapshot Report, 7 percent of the 31,468 participants in 2016 were African Americans compared to 5 percent of the 105,826 patients in 2015.
Nearly three-fourths of African Americans said that with the appropriate privacy protections, they would share personal health information “so researchers can better understand diseases and develop new ways to prevent, treat and cure them” or “to advance medical research,” according to a 2013 national public opinion poll by Research America, an alliance for discoveries in health.
And that’s what Henrietta Lacks’ family wants, too. They want a role and say in what happens to their loved one’s cells and to protect their own privacy—for revealing information about HeLa cells opens a window for the world to peer into their health as well. That happened in 2013, when German researchers published the HeLa genome sequence on public databases. After the Lacks family and others complained about privacy violations, the researchers withdrew public access.
Later that year, the National Institutes of Health reached a HeLa Genome Data Use Agreement with the Lacks family, granting two seats in a working group to “review proposals for access to the HeLa full genome sequence data.”
In January 2017, the U.S. government updated the Common Rule, which is intended to protect volunteers in federally funded studies. However, it stopped short of requiring stiffer consent rules—inspired by the Henrietta Lacks case—on the future use of leftover blood and tissue samples.
Researchers don’t need donor consent to conduct new research with leftover biospecimens as long as there are no names or other identifying details. Critics, including lobbyists for biotech companies and some university researchers, said the changes would have been too costly and unwieldy with extra red tape.
While the Lackses haven’t benefited from the biotech profits that grew with their ancestor’s HeLa cells, Skloot said proceeds from book, film, and speaking engagements help to fund the Henrietta Lacks Foundation, which provides scholarships, health care assistance, and emergency grants to family members. Two relatives also served as consultants on the HBO film.
Skloot has taken to social media to share that the film is a dream come true for Deborah Lacks, who had hoped that the book would by optioned and that Oprah Winfrey would portray her. The film also features Renée Elise Goldsberry as Henrietta Lacks, Rose Byrne as Skloot, Rocky Carroll as Sonny Lacks, Leslie Uggams as cousin and best friend Sadie Sturdivant, Ruben Santiago-Hudson as Morehouse gynecology professor Roland Pattillo, M.D., Courtney B. Vance as the opportunistic Sir Lord Keenan Kester Cofield, direction by Tony Award winner George C. Wolfe and music by Branford Marsalis.
Henrietta Lacks’ legacy goes beyond her immortal cells. Her life and death are helping to draw attention to the need for heightened sensitivity and cultural competency among medical professionals and researchers; greater transparency by pharmaceutical and other companies; consistency and clarity in obtaining informed consent; deeper discussions of ethical and moral behavior; and more diversity across the board.
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