The Henrietta Lacks movie has restarted the conversation about Johns Hopkins Hospital's controversial decision to use Lacks' cancer cells for research without her knowledge or consent. (Ulysses Muñoz / Baltimore Sun)
As a movie starring Oprah Winfrey about Henrietta Lacks and her groundbreaking cells hits television screens Saturday, one major character in her story has remained muted.
Johns Hopkins Medicine, whose doctors took Lacks' cells without her consent during a diagnostic procedure in 1951, has kept a low profile amid the fanfare surrounding the HBO movie, based on the bestselling book "The Immortal Life of Henrietta Lacks" by Rebecca Skloot.
The movie — like the book before it — thrusts Johns Hopkins into an uncomfortable spotlight and prompted some Lacks family members and others to call for financial compensation for her descendants as a form of atonement. By dredging up past wrongs, it creates at least a temporary public relations issue for the esteemed institution, crisis management experts said.
Johns Hopkins has declined repeated requests for interviews about the movie and demands by the family members, though it's issued several statements.
"The actors, directors and producers created a compelling and meaningful film," Hopkins said in a statement Wednesday. "Of course, as with any movie, time restricts how much information can be included. We hope viewers will be moved to learn more about Henrietta Lacks, HeLa cells, and the evolving understanding of bioethics over recent decades."
In an earlier statement, officials pointed out that consent practices and laws did not exist when the cells were taken from 31-year-old Lacks during a diagnostic procedure before she died of an aggressive form of cervical cancer. The institution also said it never patented the cells or profited from them.
Of course, the discovery and use of the now-named HeLa cells strengthened Hopkins' reputation. The cells were the first to live outside the body in a glass tube and contributed to billions of dollars in medical advancements. They are now the most widely used human cells in scientific research and have helped in the development of vaccines, cancer treatments and in vitro fertilization.
Hopkins has extended olive branches to the Lacks family over the years. They have developed programs to recognize and honor her, including scholarships, an annual symposium and a historical exhibit on the Johns Hopkins medical campus. A page on its website addresses the matter.
The institution also cooperated with HBO on the movie and Ronald Daniels, president of Johns Hopkins University, attended a premiere in New York City Tuesday along with 20 Lacks family members. A portion of the movie was filmed in an old hospital foyer at Johns Hopkins with a statue of Jesus that Lacks touched when she was admitted 55 years ago. HBO's art department was also given access to the Johns Hopkins archives.
But as the movie premieres, some are asking whether Johns Hopkins and others have gone far enough in repairing past wrongs.
Lacks oldest son, Lawrence, contends Hopkins has not done enough and the HBO movie only increased his ire. He and son Ron said other family members are settling for small fees from speaking engagements and advising on the movie, while others have made much more.
"So many companies are making money off of her cells," Ron Lacks said. "Even Johns Hopkins. I can't believe they haven't made money.
"When is my family going to get some relief?"
After her book was published in 2010, Skloot set up a foundation to help the family because it had received no compensation. The foundation, which raised $57,000 in the first year, has awarded more than 56 grants to Lacks descendants, including money for health care and dental care, tuition and books, job training and and emergency relief.
An HBO spokesman said the movie producers donated an undisclosed amount of money to the foundation this year because Skloot asked for it as part of the fees she was paid for the movie rights and helping to produce it.
Skloot, through a spokeswoman, declined to give her personal opinion on whether Johns Hopkins should compensate the family.
"Everyone will come to a different conclusion to that question based on their personal beliefs and opinions," she said in an email through a spokeswoman. "Rather than tell people what to think, a journalist's job is to lay out the facts so that people can have educated discussions and come to their own conclusions. … It is the hope that this book has started a large conversation around this issue."
Winfrey, who worked for Baltimore's WJZ early in her career, could not be reached for comment, but she told USA Today last week that while she is disappointed by the family divide, perhaps it is due some kind of compensation. She gave $100,000 to Alfred Lacks, a grandson of Henrietta, who recently established the Henrietta Lacks House of Healing, a foundation to help those returning from prison in the Baltimore area.
"I certainly do not feel that it is HBO's responsibility or mine or (director George C. Wolfe's) — or Rebecca Skloot's even — to now make sure that the family has money for the rest of their days," she told the newspaper. "The fact that they were never compensated for any of those cells by any of the drug companies, that is really unfortunate. I do think they should have been compensated by somebody who profited from it."
Legal analysts said a court case for compensation, as Lawrence Lacks has threatened, would be challenging, because the incident happened so many years ago in a time before consent laws that now protect patients. Even with those laws, the legal precedent for whether a person's body parts are protected from public use remains murky.
But nothing precludes Johns Hopkins from providing the family with some financial compensation, one medical ethicist said.
Dr. Arthur Caplan, director of medical ethics at the New York University School of Medicine suggested Hopkins could set up a foundation that includes contributions from Johns Hopkins, the National Institutes of Health and drug companies that have profited from use of the cells.
"It is way past time to put this particular battle to bed," Caplan said. "We can stop making the family feel like they're getting the runaround or that everyone is doing well because of their relative's history but them. Let's do more. Let's do better."
NIH consulted with the Lacks family on a 2013 agreement that required scientists receiving its funding to use a database of Lacks' genome that can only be accessed through the federal agency. Two of Lacks' descendants were appointed to help reviews requests for access to the HeLa cell line.
Researchers, however, can access the cell line through other sources.
NIH said in a statement it never entered into a formal contract with the Lacks family, but sought their input to respect their right to privacy and confidentiality. The agency funds research so "there is no legal basis for financial compensation to the family from NIH in this circumstance," the statement said.
Dr. Erin Daksha-Talati Paquette, a member of Northwestern University's Center for Bioethics and Medical Humanities, said Hopkins and NIH have done enough to acknowledge the unfairness of taking the cells.
"There are different ways to recognize the importance of respecting individuals when they are participating in research and donating their bodies or parts of their bodies to science," she said.
The questions arise as elite colleges and universities nationwide move to acknowledge and in some cases address past abuses. Georgetown University said last year it would give preferential admission to the descendants of 272 slaves the institution sold in 1838 to pay off debts.
Roland Rust, a distinguished university professor at the University of Maryland's Robert H. Smith School of Business, said he predicts the focus on Johns Hopkins will die down once the movie is out. He said what Hopkins did with the Lacks cells was not as egregious as what happened at Georgetown or with Tuskegee experiments where black men died because researchers knowingly did not treat them for syphillis.
"We are talking about something that happened more than 50 years ago," he said. "I don't think people would really connect with something that they did back then where there were different laws, different customs. I don't think they would connect that as closely to the existing organization today."
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