Henrietta Lacks (courtesy of Henrietta Lacks’ family)

Who can tell your family’s story? That’s one of the key issues the book and now HBO film, The Immortal Life of Henrietta Lacks, raises. It’s one that Henrietta Lacks’ son Lawrence and his son, Ron, have been asking for some time now.

Henrietta Lacks is the woman whose cells, named HeLa, were able to survive and reproduce indefinitely. A scientific phenomenon, the HeLa cells have aided research that has resulted in major medical advancements like the polio vaccine, gene mapping, in vitro fertilization, the AIDS cocktail and more all over the world. Because the HeLa cells traveled on the first space missions, scientists even know they can survive in space.

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Not surprisingly, the HeLa cells have helped generate billions of dollars. They have done so because, unlike other people’s cells, Henrietta Lacks’ cells survived outside her body and could multiply. And, today, they are still multiplying.

For all the great things that have come of Henrietta Lacks’ cells, the problem is that she never gave her consent. In fact, she was a black woman in the 1940s living in the Baltimore area with limited health care options. That reality led her to Johns Hopkins Hospital, where she was treated for cervical cancer. In 1951 she died. She was just 31 and left behind five children. By accident, doctors discovered that her cells could live outside her body, and the cells have been widely distributed ever since without the family ever receiving one dime.

Normally, the public would not know where such cells come from, but that obviously didn’t happen with Henrietta Lacks. Rebecca Skloot, who wrote the book and is an executive producer on the film, found out about her when she was 16 taking a biology class at a community college, and she became obsessed with finding out about her.

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Eventually she convinced Deborah, Henrietta Lacks’ daughter, known to the family as Dale, to help her. And about a decade later, the book, intertwining science with the Lackses’ personal family history, was published in 2010 to critical acclaim, taking up real estate on the New York Times’ best-seller list for six years. Oprah Winfrey bought the rights, and now we’re here at the HBO film starring Winfrey as her next-to-youngest child, Deborah, and Rose Byrne as Skloot.

Not everyone is happy or has been happy. Lawrence, Henrietta Lacks’ oldest child, who was 16 when she died, and his son, Ron, have been vocal about the book, speaking out against it for years, but they were not really heard until now, thanks to Winfrey starring in a film about Henrietta. Lawrence’s brothers David “Sonny” Lacks Jr. and Zakariyya Bari Abdul Rahman (born Joseph Lacks), it should be noted, were consultants on the film. Deborah died in 2009. Their sister Elsie, who grew up mostly in a home, died in 1955.

Over the phone, Lawrence Lacks, now in his 80s, admits that he never spoke about his mother to his sister. “My sister. She don’t know my mother. Nobody know my mother but me. She would go around all the time to try to get me to tell her about her mother, but I just couldn’t talk about my mother,” he says with a tinge of sadness in his voice. Perhaps that’s how Skloot was able to win Deborah over. “I think she found out more about her mother in that book that I couldn’t tell her.”

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But not everything in the book is good, say Lawrence and his son. The characterization of their family as poor is one of their main objections. Henrietta and her husband, David, known to the family as Day, traded in life on a tobacco farm in Clover, Va., for one in Baltimore County, where Day worked for Bethlehem Steel, in 1941. They were part of the Great Migration, when black people poured out of the South in record numbers searching for a better life in cities in the North. While Maryland is technically the South, Baltimore County and its major city of the same name was not Clover.

They settled in Turner Station, today known as Dundalk. Even as far back as the 1880s, this was a black enclave. “This pocket has an illustrious history of being a segregated cohesive unit of hardworking folks that are trying to better the lives of themselves and their children and future generations,” explains Philip Merrill, a Baltimore native, historian and African-American artifacts collector and dealer who runs Nanny Jack and Co.

Day was the family’s financial provider, while Henrietta was a homemaker. Their home was a “revolving door,” according to Lawrence, of relatives and friends coming from Clover and other parts of the South, and his mother helped shelter and feed most of them.

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But while the Lacks family may not have been poor, it was far from wealthy and health care was a major challenge. When Henrietta became sick, she was referred to Johns Hopkins even though it did not have a great reputation within the surrounding black community. Ron speaks of being taught to be distrustful of the hospital. As a kid, he was warned “not to walk past Johns Hopkins at night” for fear of being kidnapped and experimented on. That was the attitude even before his grandmother Henrietta sought treatment there.

“Hopkins is a live wire in the Baltimore area if you’re black,” says historian Merrill. “There are some successful black doctors that, after the ’60s, became prominent and connected to the hospital, but overall, the spirit of black community connection to historic Hopkins Hospital is not good. It’s not a positive conversation.”

Neither is much of Rebecca Skloot’s book, says Lawrence. “There are things I wanted kept a secret,” he says. Those things, he says, are “about her personal life, about her body, what they did to her, how they did it and where they did it. These are the things that the doctor is supposed to get permission to do, and I don’t know how anybody can go in there, bring it out and publicize it of what they did to her, how they did it, what her family life was like. They exploited her very bad.”

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Not many would willingly sign up to reveal a family past that includes incest, adultery, child molestation and abuse so publicly. Ron particularly hates the characterization of his grandfather Day as a philanderer who did not care for his wife.

“He loved Henrietta,” Ron says. “He would tell me stories when he would take me and my sister down to Clover, where he would walk with Henrietta; this is where they used to swim in the pond. He would show me the old house and how it used to look, where they used to raise cattle and chicken.”

What both Ron and his father object to the most is how influential Skloot has become in any conversation about Henrietta, her cells and her family. For Ron and his father, the issue remains self-determination. Their concern is that history is repeating itself. Just as Henrietta had no say in donating her cells, it appears that her family is not in control of her legacy.

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Ron hopes that his father will share stories of Henrietta and his life in a book of his own. For now, he is happy that “this will go down in history that there [were] family members that [were] protesting how they portrayed Henrietta and the Lacks family. That’s on record, and I’m proud of that.”