A settlement in the Henrietta Lacks lawsuit is welcome, but we’re a long way from fairness

When I see a picture of Henrietta Lacks, I can’t help but imagine a different world where we celebrate a miracle in healthcare – a mother weaving the threads of immortality and Afrofuturism.

In that different world, she would have been present for her 103rd birthday on August 1, living in the glory of being the matriarch of modern medicine. Not only would Lacks have survived her bout with cervical cancer, she would have been informed of the cell tissue taken from the biopsy used to diagnose her disease. The HeLa cells, named after her and the first “immortal” human cell line, would have been used for the financial benefit of her family in addition to the pathbreaking drug development that benefitted all humankind. She would have been celebrated as a mother of the movement, much like Ella Baker, Rosa Parks or Coretta Scott King, because, after all, healthcare is a civil right.

In this world, however, Lacks is aptly named – reflective of the disparities that exist not only in healthcare, but all human rights relating to Black people. For as much as her cells were the building blocks for important biomedical research, her story is also representative of the legacy of medical malpractice against Black people in America.

Lacks’ 103rd birthday did provide some solace for her descendants. That day, her family, alongside civil rights attorney Ben Crump, announced a settlement in a 2021 lawsuit they had filed against Thermo Fisher Scientific Inc., a biotech company that has profited from its use of HeLa cells well after it became known that Lacks and her family had not given consent to their use.

“I can think of no better present than to give her family some measure of respect for Henrietta Lacks, some measure of dignity for Henrietta Lacks, and most of all, some measure of justice for Henrietta Lacks,” Crump said, according to the Baltimore Banner. 

The terms of the agreement have not been publicly revealed. But whatever amount of money is changing hands, it will feel infinitesimal when you look at Lacks’ family history. Her mother died in childbirth when she was young and her father split up the siblings among various family members. She was essentially displaced back to slavery, not just in the form of sharecropping as a tobacco farmer, but because the log cabin where she lived with her grandfather had been part of the slave quarters on the plantation owned by her white great-grandfather and great-uncle in Clover, Virginia.

As a teenager she had two children, then followed her husband, David “Day” Lacks, to Baltimore at 20 and later had three more children. In January 1951, before the birth of her fifth and final child, she went to the only hospital in town that treated Black people – Johns Hopkins – concerned about a “knot” in her womb.

After delivery, Lacks had a massive hemorrhage and later found out from the doctors at Johns Hopkins that she had cervical cancer. During her cancer treatments, two tissue samples were taken from her cervix without her knowledge or consent. She died that October at the age of 31. An autopsy showed that the cancer had spread throughout her entire body. She was buried in an unmarked grave, and to this day, her exact burial location is unknown.

The fate of the Lacks matriarchs is grim enough, but that generational trauma was also passed down to Eliza “Elsie” Lacks, Henrietta’s second child. Elsie, who had epilepsy and cerebral palsy, was sent to the Negro Hospital for the Insane when she was just 10 years old. She died five years later. That hospital, which later became the Crownsville State Hospital, has a brutal history of being an unpaid work camp that experimented on its patients.

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Last year brought a pair of startling reports regarding the systemic medical malpractice our people have faced – one involving aftereffects from the infamous Tuskegee syphilis study, and the other from the National Clinical Care Commission regarding diabetes.

Researchers from Auburn University and Tulane University studied health disparities affecting Black people in Macon County, Alabama, where the syphilis study had been conducted. From 1932 until 1972, doctors from the U.S. Public Health Service had run a study of 600 Black men, including 399 who were infected with syphilis.

A decade after the start of the study, penicillin became a common and effective treatment for syphilis, but in Macon County, doctors intentionally denied treatment to the men in the study. As a result, 28 participants died from syphilis and a hundred more from related complications. The damage was generational – 40 spouses of participants were diagnosed with the disease as were 19 children.

Today, the researchers found that residents reported limited access to either health care (there is no hospital in Macon County) or healthy affordable food. Moreover, Black folk express a deep distrust for doctors and other healthcare workers, another lingering effect of the syphilis study.

“It’s morally unacceptable that a community that has been exploited continues to face such significant health challenges, which are traceable to systemic and structural inequities rooted in racism,” Tulane University researcher David Chae told the Montgomery Advertiser. “People died because of the Tuskegee Syphilis Study. This research should be considered part of a broader societal effort to come to terms with the enduring legacy of racism in the U.S.”

I didn’t see the Macon County study at the time of its release, but I’ll never forget how the New York Times summarized the study on diabetes:

​​“Researchers who study Type 2 diabetes have reached a stark conclusion: There is no device, no drug powerful enough to counter the effects of poverty, pollution, stress, a broken food system, cities that are hard to navigate on foot and inequitable access to health care, particularly in minority communities.”

When I hear the word “disparities,” what I really hear – and feel – is despair. It’s hard to see the disparities, or stories about the insane profits that drug companies make, and not feel hopeless in a way that makes me deeply angry. 

Our collective solace comes too slowly and in such small increments. I truly want Mrs. Henrietta and her family to lack nothing, as I do my people. My prayer and my protest reflect that of the Book of James, which seeks that our perseverance finishes its work, so that we would be mature and complete, lacking for nothing.

I interpret that as the urgent need for repair in not just healthcare, but in all of the places where America has failed Black people. From Virginia to Tulsa and all corners of our existence here, we demand more than empty words and cashless apologies.