Relatives of the late Henrietta Lacks— whose cells were taken 70 years ago and used for biomedical research that continues today— have retained high-profile lawyers.
Civil rights attorney Ben Crump and co-counsel Christopher A. Seeger held a press conference on July 29 in Baltimore attended by Lacks’ eldest son, Lawrence Lacks Sr., and multiple family members.
“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,” said Crump. “There is no clearer example of this than Henrietta Lacks and the seemingly endless manipulation of her genetic material.”
Born in Virginia, Lacks was a farmer who’d migrated to Maryland. The wife and mother of five was treated for cervical cancer at The Johns Hopkins Hospital in Baltimore, dying of the disease in 1951 at age 31.
Prior to her death, a sample of Lacks’s cancer cells retrieved during a biopsy were sent to the lab of a cancer researcher. Those cells, now commonly known as HeLa (using her initials), were discovered to have an amazing property not seen before: while other cells would perish, Lacks’s cells survived and would double. Because they could be grown continuously in laboratory conditions, HeLa cells have since been used for medical and other research. Breakthroughs range from development of the polio vaccine, to treatments for cancer, HIV/AIDS, Parkinson’s disease, and in vitro fertilization. Lacks’s cells have also been used in cosmetics testing, and they were even sent to space to study the impact of zero gravity. More recently, they have reportedly been used in COVID-19 research.
Yet Crump contends, “the pharmaceutical companies have been unjustly enriched by this unethical taking of her cells, while Henrietta Lacks’s family has never been afforded any equity.” Billions of dollars have been made, he said.
Seeger added that Lacks’s cells have been “monetized by big pharmaceutical companies for decades…these companies have profited from the ill-gotten genetic material of Mrs. Lacks, taken without her permission. It’s simply not right and we intend to hold them accountable.”
Speaking at last week’s press conference, Kim Lacks called what happened to her grandmother a “theft.”
Lacks’s story garnered national and international attention following the 2010 publication of “The Immortal Life of Henrietta Lacks,” by author and journalist Rebecca Skloot. The award-winning nonfiction book became a bestseller and later an Emmy-nominated HBO film starring Oprah Winfrey as daughter Deborah Lacks, and Renee Elise Goldsberry as Henrietta Lacks.
Crump told ESSENCE in an interview that he and his legal team are “researching all aspects of getting equity and relief for the descendants of Henrietta Lacks.” A lawsuit is expected to be filed on October 4, the anniversary of her death. He said hundreds of pharmaceutical companies as well as others could potentially be sued.
ESSENCE contacted Johns Hopkins for comment and was directed by a spokeswoman to a website. It states that Johns Hopkins “has never sold or profited from the discovery or distribution of HeLa cells and does not own the rights to the HeLa cell line.”
The website further notes that in the 1950s, when Lacks was hospitalized, there were no established practices for informing or obtaining consent from patients when retrieving cell or tissue samples for research purposes, nor were there any regulations on the use of patients’ cells in research. “It was common practice at Hopkins for extra samples to be collected from cervical cancer patients during biopsies to be used for research purposes, regardless of race or socio-economic status.”
The Lacks case influenced an update to the Common Rule, an ethical standard for informed patient consent in the medical community. It requires doctors to inform patients if any aspect of their medical case will be used for research and to assign them a code number to establish anonymity.
Crump, who has represented the families of George Floyd, Breonna Taylor, and others in lawsuits related to fatal policing, said he believes the Lacks case ties into larger issues revolving around race. “We have to make America respect the value of Black life.”