This article first appeared in the St. Louis Beacon, March 21, 2011 - The story is so fantastic it sounds like fiction. A poor Baltimore woman named Henrietta Lacks, who is getting treatment for cervical cancer at Johns Hopkins Hospital, is found to possess remarkable cells. Unlike other human cells, these don't die but grow and spread "like crabgrass," as one fascinated lab assistant puts it.
George Gey, the scientist who first grows the cells, suspects he's onto something and whispers as much to a few colleagues. Although believing correctly that he has grown the first immortal human cells, Gey never tries to profit from this work. He freely gives samples to other researchers.
Medical work and the buying and selling of what becomes known as the HeLa cells evolves into a multimillion-dollar industry, creating wealth for research institutions and biotech companies, and aiding in many medical breakthroughs. These include the polio vaccine, in vitro fertilization, cloning and gene mapping.
But none of this fame or fortune finds its way to descendants of Henrietta Lacks, who is married and the mother of five children. In 1951, the same year of Gey's discovery, she dies and is buried in an unmarked grave, apparently never learning about the inestimable worth of her "immortal" cells.
Because she was black and treated in the Hopkins' "colored" ward, many people think of her story mainly as a tale of how African Americans have been unwitting subjects of human experimentation without compensation. That's part of the story documented in Rebecca Skloot's probing best-seller, "The Immortal Life of Henrietta Lacks." But the author notes that the story also raises just as many questions "about issues of class and economic injustice" as matters involving ethics.
People have asked Skloot whether the cells would have been taken had Henrietta Lacks been a white woman. To which Skloot replies, "The answer is yes, if she'd been white and poor." She adds that even many of the difficulties Henrietta Lacks' children have encountered over the years also "came down to issues of class." These, she says, include little access to education and the irony of being unable to afford health care in spite of having a mother whose cells contributed to numerous scientific advances.
St. Louisans can become part of this conversation Wednesday when Skloot makes appearances at Washington University's Graham Chapel at 4 p.m., and at the Missouri History Museum at 7 p.m. Her visit to the museum is part of a yearlong museum series, "Class: The Great Divide."
By coincidence, Skloot's visit also occurs on the day of the first anniversary of the signing of the federal Affordable Care Act. Skloot writes that Henrietta's story is relevant to the current health insurance debate. People who have biopsies, she notes, must sign forms leaving it up to their physicians to decide how to dispose of the tissues or allowing them to be used for scientific research that, in theory, helps everyone. Trouble is, everyone does not benefit because this nation doesn't yet offer universal access to health care.
A "pretty stark point in the health-care debate," Skloot says, is that medical advances coming from tissue research aren't always accessible to everyone, "including those who provided raw materials for the research."
Skloot was unable to find time for a Beacon interview before arriving in St. Louis and couldn't guarantee one while here. Material for this story is based mainly on her book, other print material distributed by her publisher, and from people involved with privacy protection issues surrounding medical research.
Informed Consent
One of those people is Iris A. Malone, an Independent Review Board analyst at St. Luke's Hospital in Chesterfield. A federal law that went into effect in 1974 mandates that institutions set up IRBs or something similar to review research proposals involving human participants and to make sure the privacy and interests of human participants are protected.
When Lacks was admitted to Hopkins, she signed a form consisting of fewer than 50 words, in effect giving the hospital the right to do what it wanted to do to treat her. Contrast that with the IRB form at St. Luke's and at many other area hospitals. The form consists of about a dozen pages that spell out ethical principles along with several elements of informed consent, including the purpose of the research, the procedures, the risks, benefits, alternatives to participation, confidentiality, patients' rights and study contact information.
Still, the existence of IRBs isn't necessarily known to everyone, Malone concedes.
"When I talk to some people and tell them what I do at St. Luke's, they look at me like I have four eyes," she deadpans, then gets serious about medical protections now and during the days of Henrietta Lacks.
"Back then, people didn't question doctors. She was in the colored ward, went through a different door and I'm not sure that she fully understood what she was doing. I say that because after she got a little better, she asked her doctor when she could have babies again. He told her she couldn't have any. Had she known that in the beginning, she probably wouldn't have had the cancer treatment."
The other issue, Malone notes, is that others have made money from her cells "and are still making money while her descendants remain destitute, still don't have health insurance. I think that's the major thing that gets to people."
Henrietta Lacks Foundation
The story reads like a medical mystery as the author, aided by the Lacks family, set out to fill in the blanks about what happened to Henrietta Lacks. It's also a story about how an author has tried to repair or compensate for wrongs by others.
Seeing how Henrietta Lacks got nothing in return for her cells and contributions to science, Skloot decided to use some of the proceeds from the sale of the book, along with public donations, to set up the Henrietta Lacks Foundation. How much money has been raised so far is unclear; donations have been in the $50-$100 range. Some of the money already has gone to scholarships and some medical assistance for the grandchildren and great-grandchildren of Henrietta Lacks.
Still, Skloot doesn't say that Hopkins did anything wrong. Lacks is said to have received good treatment, and the hospital is said to have complied with medical rules in place at the time. Hopkins hasn't donated to the foundation, but it has put money into a lecture series and a $10,000 yearly college scholarship fund for the needy in the name of Henrietta Lacks. Meanwhile, some foundation donations have come from individual scientists, some of whom have told Skloot and Lacks' descendants that they had been ignorant until now of the remarkable story behind the cells they had been using for research.
Skloot had expected biotech companies and research organizations to contribute, too. So far, none has. She adds that the reason is that these groups have used cell tissues from millions of people and fear that a donation even to the foundation would set a legal precedent.
Analysis: An Absorbing Tale, Strongly Told
Plenty of books have been written about the way the scientific community has exploited people for its own benefits. But few have captured the public's imagination the way Skloot's book has. Perhaps that is because she has been able to put a face on the cells and has used novelistic techniques to tell an engrossing story. Skloot stresses that her re-created scenes were informed by interviews, legal documents and medical records.
One of the strongest characters in the drama is Deborah Lacks, a daughter of Henrietta Lacks. In the beginning Deborah Lacks comes across as having little interest in cooperating with Skloot. She's transformed as she learns more about her mother's life, death and cells. Skloot and Deborah Lacks eventually become good friends and set out to find medical records and all they can about the Lacks family medical history. In one scene at the Hospital for the Negro Insane, take-charge Deborah barrels through a door with letters that say "Authorized Personnel," with Skloot following almost timidly. Our expectations are thwarted after Deborah walks into a warehouse-size medical room and sees it's empty, "no staff, no chairs, no visitors and no medical records."
Unperturbed, she next convinces Skloot to go right away to the Maryland State Archives office in Annapolis. The usually eager Skloot is a little tired and suggests that the two take a break and make the trip another day. But Deborah is still fired up, bouncing "in the seat of her car, gospel music blaring so loud I could hear it with my windows up," Skloot writes. At the the archives front desk, Deborah is waving a family photo and telling the receptionist, "Hi, my name's Deborah and this is my reporter (Skloot), you probably heard of us, my mama's in history with the cells, and we just found this picture..." You can almost imagine Skloot shaking her head in disbelief.
The contrast between this short black woman in her 50s from the East, and Skloot, a tall white woman in her 20s from the Pacific Northwest and Midwest, makes quite an impression on the receptionist and readers. No wonder HBO wasted no time in buying up the movie rights.
Even so, the issue at the heart of the story, the question of whether patients should own their cells or tissue, remains unresolved. In spite of the good work of IRBs and other patient protections, this tale underscores the fact that some patient-rights issues are as muddled today as they were during the life of Henrietta Lacks.
Funding for the Beacon's health reporting is provided in part by the Missouri Foundation for Health, a philanthropic organization that aims to improve the health of the people in the communities it serves.
