COURTESY OF MORGAN OME Some members of the Lacks family believe that the NIH, Rebecca Skloot and Hopkins Hospital have distorted Henrietta Lack’s legacy.
In 1951, the Johns Hopkins Hospital took cervical cancer cells from Henrietta Lacks, a black Baltimore resident, and developed the HeLa cell line. Her cells contributed to major medical discoveries, including the development of polio vaccine.
Neither Henrietta nor her family gave the Hospital permission to use her cells at the time.
Some members of the Lacks family, who had formerly made peace with Hopkins after learning in the 1970s that it had taken Henrietta’s cells, now plan to sue the Hospital in the coming weeks.
They also want compensation from other individuals and institutes, including the National Institute of Health (NIH); Rebecca Skloot, the author of The Immortal Life of Henrietta Lacks; Crown Publishing; and HBO, which plans to release a movie starring Oprah Winfrey based on Skloot’s book.
Hopkins Hospital claims it does not profit from Henrietta Lacks’ cells, stating that it never patented the HeLa cells and that it does not own the rights to the cell line.
Ron Lacks, one of Henrietta’s grandchildren, said that the “straw that broke the camel’s back” was Skloot’s interference in 2013 family negotiations with the NIH without the approval of Lawrence, Ron’s father and executor of the Henrietta Lacks Estate.
“We decided enough was enough,” Ron said. “They keep saying the Lacks family is getting greedy. It wasn’t about the money when we made peace with Johns Hopkins... It’s about the principle. We want to get our respect back.”
According to Ron, Skloot’s bestselling book was an inaccurate portrayal of the family’s history.
“Not only did they steal her cells, but Rebecca Skloot, a white woman, was telling a black family story,” he said.
The Immortal Life of Henrietta Lacks, first published by the Crown Publishing Group in 2010, details both Henrietta’s story and that of the HeLa cell line. It is now required reading in several universities and high schools across the U.S. A spokesperson from the Crown Publishing Group rejected Ron's accusations and maintained that the book is entirely accurate.
"Rebecca Skloot’s critically acclaimed and prize-winning book, The Immortal Life of Henrietta Lacks, is a meticulously researched and reported work of independent journalism that we have been proud to publish," the spokesperson wrote in an email to The News-Letter. "Since its publication seven years ago, the book has brought heightened awareness to the significant contributions of HeLa cells to medicine and modern science, and numerous members of the Lacks family have participated in interviews and public events in support of the book and of the importance of telling the story of Henrietta Lacks."
"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," the spokesperson wrote. "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. Any statements made to the contrary are simply not true."
Ron argues that the book does not do Henrietta’s legacy justice, and inaccurately depicted the Lacks family as impoverished, uneducated farmers and former slaves.
“You’d think that [since Henrietta] helped so many, that [Skloot] would try to find a silver lining in our family somewhere in the book,” Ron said. “Everybody that we’d meet, they’d think we’re still living in that shack that Rebecca got in the book. I mean they still think we’re poor. That’s because of the book. It was racial stereotyping.”
The book neglects to mention that Lawrence was an Amtrak engineer and that the Lacks family owned thousands of acres of land. Ron said Henrietta and her family are descendants of an interracial marriage between an African-American woman and a white man with the surname Lacks, who inherited land along with his brothers.
The book also claims that the white Lacks families were slave owners, which Ron denies.
“They’re so far from the truth because our upbringing was totally opposite of what was written in the book,” Ron said. “My friends, my nieces, they look at this and say, ‘Your family is really like that?’”
After reading the manuscript, Lawrence approached Skloot and pointed out the story’s inaccuracies. Lawrence asked her to revise her work, but Skloot refused.
“She said, ‘This is my story,’” Lawrence said. “I couldn’t figure out how it was her story, when my family was betrayed.”
Skloot claimed that she had consent and source material from Deborah Lacks, Henrietta’s daughter. Lawrence said that Deborah also disapproved of the manuscript and that both she and Lawrence pointed out its inaccuracies. However, she passed away before the book was published.
Although Lawrence objected to the book and Skloot’s dealings with the NIH, Skloot claims she had the family’s consent. Alleged family members who gave consent include Veronica Spencer and Victoria Baptiste, who are both identified as Henrietta’s great-granddaughters by the Henrietta Lacks Foundation, which is managed by Skloot.
However, according to the Lacks Estate, neither Spencer nor Baptiste are related to Henrietta. The Lacks Estate said that DNA testing records exist which can prove that they are not genetically related to the Lacks family. Spencer currently sits on the HeLa Genome Data Access Group, which reviews requests to access the HeLa cell line data.
“[Spencer and Baptiste] were raised up with us. They called [my father] grandpop. But they’re not blood-related to Henrietta,” Ron said. “So [the NIH and Skloot] got [Spencer] sitting on the board, thinking they got his grandchildren. We tried to explain to them that they’re not family.”
The Estate recently contacted the Baltimore Police Department (BPD) and that they have begun a fraud investigation into Skloot’s relationship with the family.
Ron said that other recognized family members have accepted money from Skloot to appear alongside her.
“They were taken advantage of,” he said. “They’d go out on speaking engagements, getting paid by Rebecca Skloot. They signed their rights away, they didn’t care about talking about their grandma, they decided. When Rebecca came into the picture it was like she put a wedge in between the family.”
However, Ron and Lawrence say that the Estate has not received any profits from Skloot’s book.
“All the younger generations are going out and speaking, and they were never corrected about anything because they didn’t know,” Lawrence said.
Ron said he once went to a speaking engagement, but Skloot did not invite him back.
“She wouldn’t let me come back any more,” he said. “Because I’d signed nothing, I was able to say what I wanted to say. They ask the same questions, and they’d ask: ‘Did you make any money from the book?’ Because a lot of people think we got royalties.”
Skloot also had access to photographs of Henrietta provided by Lawrence. She said that Lawrence loaned them to her for research purposes. However, according to the Estate, the media representative, these photographs which are the property of the Lacks Estate were published without approval.
The Lacks Estate stated that Lawrence met with Skloot and requested repeatedly that she return the photos. The photos were not returned.
“We call it the Hopkins Virus,” Ron said. “If anybody comes in contact with Hopkins, they think they can take advantage of the Lacks family. NIH, Rebecca Skloot, everybody. [They] totally, blatantly don’t want to ask the family members for permission.”
At the time of Henrietta’s death in 1951, there was no law stating that hospitals had to obtain permission from patients to harvest cell samples for research. However, doctors asked her husband David Lacks whether they could perform an autopsy. Ron said David opposed this proposal at the time.
“Several times my grandfather said no,” Ron said. “Later on in life when we found out, they named the woman [under pseudonyms like] Helen Lane, Helen Larson, anything to cover up Henrietta Lacks. When my mother met the doctor and found out about it, they kept us in the dark.”
The Lacks Estate hopes that their current efforts will not only raise awareness about their struggles with the Hopkins Hospital, the NIH, Skloot and other related organizations, but also do justice to her legacy.
“[We would like her remembered] not just as a cell,” Ron said. “She was a mother, a grandmother, a great-grandmother. She was a good cook. She used to ride horses.”
The Lacks Estate also hopes to write and publish their own book on Henrietta and their family to tell a different side to the story.
Ron also personally hopes to have Henrietta recognized during Black History Month.
“She deserved it really,” Ron said. “She helped so many, you’d think it would have already been there by now. Only Jesus Christ has saved as many lives as my grandmother’s cells have.”
Lawrence was positive about their efforts, but said that it was important to spread the word and have others help them with their cause.
Ron specifically appealed to Hopkins students to help revive Henrietta’s legacy.
“We need help with all areas. #SaveHenrietta,” he said. “We need students that think like that to help come up with some ideas on how we can get our point across.”
Ron said that ultimately, what their family wants most is a voice.
“Look at all these years that have passed by,” he said. “We only want to be heard.”
Editor's Note: This article has been updated to better reflect the opinion of Rebecca Skloot and the Crown Publishing Group.
Correction: Victoria Baptiste does not sit on the HeLa Genome Data Access Working Group. The photo depicting Lawrence Lacks was incorrectly credit to the Estate instead of Hope Lacks.