Turmoil in Lacks Family Shadows Premiere of Oprah Movie

by: Deborah Bailey Special to the AFRO
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Lawrence Lacks has no personal problem with Oprah Winfrey or her interest in the life of his mother, Henrietta Lacks, donor of the now world-famous immortal HeLa cells. In 1951, a doctor at Johns Hopkins Hospital took samples of Henrietta’s cervical cells without her knowledge or permission. Lacks, his son Ron, and the entire family attended “the meeting” as Lawrence calls it, with high hopes. They thought Winfrey came with interest in learning more about their story.

The entire Lacks family with Rebecca Skloot (center). Several members of the Lacks family take issue with the
upcoming Oprah Winfrey produced movie ‘The Immortal Life of Henrietta Lacks.’ (Courtesy photo)

“But Oprah came to announce to us what she had already decided to do,” Lacks told the AFRO. Oprah Winfrey purchased the rights to Rebecca Skloot’s book on Henrietta Lacks and the medical miracle of the HeLa cells, “The Immortal Life of Henrietta Lacks.”  HBO and Winfrey first announced the film project in 2010 and visited the Lacks family in 2016 before the start of filming.

“She offered $50,000 to be split among the entire family but we would have to sign an agreement,” Lacks said.  Lacks said the HBO agreement contained multiple limitations on his right to “speak freely about my own mother” and declined to sign. Ron and his entire family declined as well.

In a recent interview with the New York Times, Winfrey mentioned her disappointment in not having the cooperation of Lawrence and Ron to sign on to her portrayal of their family in her upcoming film.

“We offered them to be consultants on the film, but a small portion of the family didn’t want to be a part of it,” Oprah told the paper referring to Lawrence, Ron and other family members who did not sign the lengthy HBO waiver of rights.

Ron said that three family members, including his uncle David “Sonny” Lacks, signed the HBO agreement. “After attorney’s fees, they only received about $4,000 each,” Ron said questioning the value of being legally bound to Winfrey’s adaptation of the Henrietta Lacks story.  (David Lacks suffered a disabling stroke in 2015.)

Lawrence Lacks said he informed Winfrey’s HBO attorney that he had already established an estate in the name of his mother and questioned why Winfrey was connecting with individual family members rather than going through the estate.  HBO, according to Lawrence, has not responded.

“My dad felt it was important to get a handle on all this that was going on with my grandmother,” Ron Lacks said.

“I can’t understand since we have the estate in place that they would simply go around me,” Lawrence Lacks said of Winfrey’s decision to sign on with individual family members.

A matter of respect

Lawrence Lacks says he is not trying to be difficult. He is a soft-spoken, reflective man, but becomes resolute in affirming his mother and her legacy.  The 82-year old Lacks is proud to be the patriarch of his family, and proud of the singular contribution his mother has inadvertently made to science.

The encounter with Oprah and the HBO Production team is simply one of a number of troubling exchanges Lacks has had with medical and corporate entities who have become interested in the Lacks legacy over the last 40 years. He characterizes these exchanges as “disrespectful.”  Lacks has been amazed at the gulf between his world as Henrietta Lacks’ eldest son and the interests of Hopkins, Skloot and HBO.

Bobette and Lawrence Lacks tried repeatedly to connect with Hopkins Hospital through the 1970’s and the 1980’s.  After Bobette’s chance encounter with a doctor at Hopkin who mentioned the HeLA cells project in 1975, they tried every way they could to obtain information about the HeLa Cells Project, Henrietta’s medical care, about the unsettling images Lawrence remembered from his youth – of multiple white doctors in his mother’s hospital room – the Colored wing at Hopkins.

“My wife was up there at Hopkins almost every week trying to get them to tell her something,” Lacks said about Bobette’s relentless efforts to seek details about the HeLa Cells project.

Then, in the late 1980’s-early 1990’s Rebecca Skloot started contacting the Lacks family. She also curiously gained access to the plethora of detailed medical records and information from Johns Hopkins that unlocked the mystery behind the HeLa cells for research on her book that was ultimately published in 2010.

Most of the information in Skloot’s book and, ultimately, in Winfrey’s upcoming HBO portrayal about the Lacks family came from interviews with Deborah Lacks, Lawrence’s younger sister.  Deborah, who died in 2009 before the book was published, served as Skloot’s guide to members of Henrietta Lacks’ extended family in Virginia.

Deborah, who would have been a child when her mother died, was interested in Skloot’s book because it provided a window to her mother’s life and the mysterious information about the HeLa cells – a window denied to Lawrence Lacks and his wife in the years they sought to gain the same information from Hopkins that Skloot used to publish and profit from a New York Times best-selling book.

“Deborah was always asking me about our mother, always asking me about the family,” said Lawrence. He shared information and photographs with Deborah that she ultimately passed on to Skloot.  Lacks said he never saw a copy of the agreement Skloot made with his sister and when he asked Skloot for   the agreement after Deborah’s death, the author did not respond.

“After all of that information she got from my sister, she didn’t even come to Deborah’s funeral,” Lacks taking said.  Skloot’s book documents the fact that the relationship between her and Deborah had cooled.  “Dale (Deborah) knew she was being exploited,” Ron Lacks said.

Skloot did not respond to a request for a comment on Lack’s allegations. Her publisher, Crown Publishing Group , said in a statement, “In advance of the book’s publication, Ms. Skloot provided multiple copies of the manuscript to members of the Lacks family and solicited their comments and corrections, which were subsequently incorporated in the book. Lawrence Lacks consented to be interviewed by Ms. Skloot during her reporting and attended meetings with Ms. Skloot and other family members at which the contents of the book were discussed at length. The manuscript also went through an extensive fact checking process, and we fully stand behind it. Mr. Lacks, who reportedly acknowledged that he has never read the book, has made statements about The Immortal Life of Henrietta Lacks that are baseless and inaccurate.

 

A better story needs to be told

Both Lawrence and Ron Lacks believe there is more to the legacy of their mother and grandmother, Henrietta Lacks. Lawrence remains unsettled by Johns Hopkins’ denial of any responsibility for harvesting Henrietta’s cells without her knowledge or consent.  Johns Hopkins has repeatedly indicated that today’s informed consent standards, which would have protected Lacks, were not in place in 1951.

“It’s a real story and they could have come and got it from her son who watched Henrietta all the way to her death bed,” said Ron Lacks about his father.

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