Henrietta Lacks, an impoverished, African-American tobacco farmer, underwent a diagnostic procedure to biopsy a malignant cervical tumor on February 8, 1951. During the procedure, researcher George Gey at Johns Hopkins cultured Lack’s cells without her knowledge or consent. The cervical cancer cells are known as HeLa (the patient’s first two letters of the first and last name), which are the most commonly used and oldest human cell line in the world. Lacks succumbed to her illness on October 4, 1951 at 31 years of age.
The HBO docudrama “The Immortal Life of Henrietta Lacks” starring Oprah Winfrey “Queen of All Media”, Academy Award nominee, is based on the bestselling book of the same name by Rebecca Skloot.
The movie puts Johns Hopkins in an uncomfortable position, prompting some members of the Lacks family to request reparations for Henrietta’s descendants. Crisis management experts say dredging up past wrongs creates at least a temporary public relations issue for the esteemed institution.
“The actors, directors and producers created a compelling and meaningful film,” Hopkins said in a statement on 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 the 1950s, laws and consent practices did not exist, Hopkins said in earlier statements. The institution has denied profiting from or patenting the HeLa cells, but their reputation was strengthened because of them and they have contributed to billions in medical advancements. Gev discovered that the cells could be kept alive, isolate a single cell, multiply it and create a cell line. The cells have aided in the development of cancer treatments, in vitro fertilization and vaccines.
Over the years, Johns Hopkins has developed programs to honor Henrietta Lacks, including an annual symposium, historical exhibit and scholarships. The president of Johns Hopkins University, Ronald Daniels, attended a premiere on Tuesday in New York City and 20 members of the Lacks family were in attendance, as well. Hopkins has cooperated with the development of the film, by providing HBO’s art department access to the institution’s archives and an old hospital foyer, with a Jesus statue that was touched by Lacks 55 years ago.
Lawrence, Lacks oldest son, says he feels that Hopkins should have done more and the movie has only made him angrier. He said that some of the family members are getting compensated for speaking engagements, along with him and his son Ron, but 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?”
In 2010, when the book was published, Skloot set up a foundation to help the family financially, since they had not received compensation. A total of $57,000 was raised and the foundation awarded Lacks descendants over 56 grants, including funding for dental care, healthcare, books, tuition, emergency relief and job training.
According to an HBO spokesman, the network had donated an undisclosed amount of money to the Lacks foundation earlier this year. It was part of a deal that HBO had made with Skloot as part of the fees she was paid for helping to produce the movie and the movie rights.
Oprah Winfrey had donated $100,000 to Alfred Lacks’ foundation, Henrietta Lacks House of Healing.
“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 USA Today. “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.”
The director of medical ethics at the New York University School of Medicine, Dr. Arthur Caplan, recommended Hopkins to set up a foundation that includes contributions from the National Institutes of Health (NIH), drug companies that have profited from the HeLa cells and Johns Hopkins.
A 2013 agreement, with NIH and the Lacks family requires researchers receiving its funding to utilize a database of Lacks’ genome, which can only be access through the agency itself. Review requests would be assessed by two of Lacks’ descendants and the federal agency, before access would be granted. However, researchers can easily access the HeLa cell line via other sources.
As of today, scientists have grown an estimated 20 tons of Lacks’ cells, with nearly 11,000 patents involving HeLa cells.