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Henrietta Lacks’ Family Sues Biotech Company, Says It Used HeLa Cells Without Consent

Update (Oct. 6, 2021):  More than 70 years after Henrietta Lacks contributed to groundbreaking medical research, the woman’s family is now suing a biotechnical company known as Thermo Fisher Scientific Inc. for using her cells to make a profit without permission, CNN reported.  

The complaint states that the company is “making a conscious choice to sell and mass produce the living tissue of Henrietta Lacks,” a Black woman who had tissue taken from her cervix without consent during a procedure at Johns Hopkins Hospital after she was diagnosed with cervical cancer in 1951. 

Thermo Fisher Scientific, according to the family, is knowingly profiting from the “unlawful conduct” of the Johns Hopkins doctors.

The company’s choice to continue selling HeLa cells, the cell line which has allowed scientists to create life-saving medicine for polio, AIDS and other diseases, is being perceived as an example of racial injustice. 

“Thermo Fisher Scientific’s choice to continue selling HeLa cells in spite of the cell lines’ origin and the concrete harms it inflicts on the Lacks family can only be understood as a choice to embrace a legacy of racial injustice embedded in the US research and medical systems,” the lawsuit stated. “Black people have the right to control their bodies. And yet Thermo Fisher Scientific treats Henrietta Lacks’ living cells as chattel to be bought and sold.”

Attorneys are demanding the $35 billion company to give up “the full amount of its net profits obtained by commercializing the HeLa cell line to the Estate of Henrietta Lacks.” They’re also asking for reasonable costs and expenses, which they estimate to be $250 billion. Additionally, the family is asking the company to permanently stop the use of HeLa cells without the permission of the Lacks’ estate.  

While finding itself at the center of the controversy, Johns Hopkins acknowledged that Lacks’ cells were taken without permission in the 1950s.

“At that time, our physician researchers routinely collected extra cell samples from cervical cancer patients during biopsies to be used for research purposes regardless of the race or socio-economic status of the patient,” the hospital said in a statement to CNN. “In 1951, the U.S. health system did not yet have any established practices for informing or obtaining consent from patients when retrieving extra cell or tissue samples from procedures to use for research purposes.”

The hospital adds that it has “never sold or profited from the discovery or distribution of the HeLa cells.” 

“In addition, in 2013, Johns Hopkins worked with members of the Lacks family and the National Institutes of Health (NIH) to help broker an agreement that requires scientists to receive permission to use Henrietta Lacks’ genetic blueprint, or to use HeLa cells in NIH funded research,” the hospital stated.

Original (Aug. 2, 2021): The family of Henrietta Lacks, also known as “The Mother of Modern Medicine,” is taking legal action against pharmaceutical companies for using her cells without permission. 

“The pharmaceutical corporations unethically and some may say illegally took her cells, her miraculous cells without her knowledge nor permission and they have manipulated her genetic material to this day,” civil rights attorney Ben Crump, who is representing the family, said, CBS Baltimore reported. “Her family is here today to start the journey to right that wrong.”

In 1951, Lacks arrived at Johns Hopkins Hospital with complaints of vaginal bleeding. After examination, a gynecologist found a large, malignant tumor on the 31-year-old’s cervix, leading her to undergo cancer treatments. Following a biopsy, a sample of Lacks’ cancer cells were sent to Dr. George Gey’s tissue lab where he discovered Lacks’ cancer cells were unique. Gey discovered her cells could grow and duplicate every 20 to 24 hours, while all other cancer cell samples from other patients would die outside of the body. 

Following Lacks’ death in Oct. 1951, Dr. Gey then dubbed his unique discovery “HeLa cells,” which have contributed to breakthrough findings in the medical field, including the understanding of viruses, cancer treatments and the effects of poison and radiation on the human body. In addition, “HeLa cells” also played a pivotal role in the development of the polio vaccine. 

Despite Lacks’ cells providing groundbreaking advances in science, neither she nor her family offered consent for them to be utilized for research and/or commercial purposes.

“The family has not received anything from that theft of her cells, and they treated her like a specimen, like a lab rat like she wasn’t human, with no family, no babies, no husband that loved her,” Lacks’ granddaughter, Kimberley Lacks, said.

In 1991, The Federal Policy for the Protection of Human Subjects or the Common Rule was adopted by a handful of federal agencies to protect patient privacy. The law requires doctors to inform patients if their medical cases would be used for further research and guarantee that their identities would remain anonymous. 

Johns Hopkins upholds, however, that there was no such law in place at the time of Lacks’ medical treatments.

“Johns Hopkins Medicine celebrates and honors the incredible contribution to advances in biomedical research made possible by Henrietta Lacks,” the hospital said. “Johns Hopkins never patented HeLa cells, and therefore does not own rights to the HeLa cell line. Johns Hopkins also did not sell or profit from the discovery or distribution of Hela cells.”

Ultimately, Lacks’ family says they have struggled for years in an ongoing battle with Big Pharma, including but not limited to Johns Hopkins. 

“The American pharmaceutical community has a shameful history of profiting off research at the expense of Black people without their knowledge, consent, or benefit, leading to mass profits for pharmaceutical companies from our illnesses and our very bodies,” Crump told The Washington Post.

Another family representative, New York-based attorney Chris Seeger, who has also won billion-dollar settlements against companies like Volkswagen and the producer of the painkiller Vioxx, said efforts are being directed at any company who has exploited “HeLa cells.”

“We are doing our research and figuring out every pharmaceutical company that has made a product that has either used the cells to build their products or commercialize it in some way or develop it so that’s a lot of companies,” he said. 

Seeger also mentioned that about 100 other companies could be a part of the lawsuit.

“This is the greatest example of corporate theft I’ve seen in my career and I’ve been pursuing pharmaceutical companies for 25 years,” Seeger told The Baltimore Sun. “They took something from this family and have offered them nothing, yet they’ve gone out and made millions of dollars.”

The legal team plans to file lawsuits on Oct. 4, the 70th anniversary of Lacks’ death.

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