Lacks family continues legal battle against exploitation in medical research

Just days after concluding a settlement with a biotech entity they accused of unjust enrichment from the cells of their ancestor, Henrietta Lacks’ family has initiated another legal battle. This time, they’re targeting the California-based biopharmaceutical firm, Ultragenyx. The lawsuit was filed in the Baltimore federal court this Thursday, a venue familiar to the Lacks family as their recent suit also concluded there.

Henrietta Lacks, a Black mother of five from Virginia, was diagnosed with cervical cancer in 1951 while residing near Baltimore. Johns Hopkins Hospital collected a sample of her cancerous cells during a biopsy without her informed consent. Though Lacks passed away at the young age of 31, her cells, named HeLa cells, became a groundbreaking discovery in medicine. These cells were the first to continuously grow outside the human body, leading to pivotal advancements, including the polio vaccine, genetic mapping, and even the formulations for COVID-19 vaccines.

The Lacks family’s complaint highlights the profits Ultragenyx amassed from utilizing HeLa cells for their gene therapy products. “Medical research, marred by a history of racial inequities, has repeatedly exploited Black Americans, like Henrietta Lacks, to pave the way for significant medical progress and profit,” the family’s attorneys stated, according to the Associated Press. “This exploitation, devoid of due compensation or acknowledgment, is a grim reflection of Black suffering in America’s past and present.” Ultragenyx, when contacted for a statement, remained silent.

Although the 1951 removal of Lacks’ cells was technically legal, the lawsuit alleges Ultragenyx capitalized on the cells long after the world became aware of their controversial origin. This “unjust enrichment” argument mirrors the family’s recent case against Thermo Fisher Scientific Inc., settled earlier this year under undisclosed terms.

During a press briefing held on what would’ve marked Lacks’ 103rd birthday, her descendants expressed their long-awaited sense of justice. The significance of HeLa cells is monumental; unlike others, they persisted and flourished in labs, granting researchers the ability to reproduce studies using identical genetic compositions.

Rebecca Skloot’s 2010 book, “The Immortal Life of Henrietta Lacks,” brought Lacks’ story into the mainstream. Later, an HBO film adaptation starred Oprah Winfrey as Lacks’ daughter, further highlighting the family’s enduring challenges, some of whom grappled with chronic illnesses without medical insurance.

Johns Hopkins has clarified that it never monetized or sold the HeLa cell lines. However, multiple companies have patented techniques utilizing them. The current lawsuit emphasizes Ultragenyx’s oversight in not reaching out to Lacks’ descendants, even after understanding the origins of HeLa cells.

Ben Crump, representing the Lacks family, asserted, “Ultragenyx’s decision to continue exploiting HeLa cells, fully aware of its origin and the evident harm it causes the Lacks family, showcases a deep-seated legacy of racial injustice rooted in U.S. research and healthcare.” He emphasized the inalienable right of Black individuals to have autonomy over their bodies.

Crump, known for championing civil rights causes and representing victims of police violence, signaled that the Lacks family intends to pursue more such lawsuits, drawing attention to a longstanding history of Black bodies being appropriated for medical advancements without consent.

The Historical Exploitation of Black Bodies in Medical Research

The Lacks family’s lawsuit against Ultragenyx isn’t an isolated incident, but a stark reminder of a dark, enduring chapter in the annals of American medical research. Throughout history, Black individuals, often without their knowledge or consent, have been exploited for scientific and medical advancements. The narratives below shed light on this disturbing legacy:

1. The Tuskegee Syphilis Study (1932-1972): One of the most infamous examples, the Tuskegee Study involved the U.S. Public Health Service studying the progression of untreated syphilis in Black men without informing them of their condition or providing treatment. This unethical study lasted 40 years, resulting in numerous unnecessary deaths and widespread transmission of the disease to spouses and offspring.

2. J. Marion Sims, the “Father of Modern Gynecology” (19th Century): Dr. J. Marion Sims is credited with pioneering gynecological surgeries. However, his advancements came at a grave moral cost. He conducted experimental procedures on enslaved Black women without anesthesia, claiming that Black individuals didn’t feel pain the way whites did—a deeply entrenched racist belief of the time.

3. Grave Robbing and Anatomy Lessons (Late 18th to 19th Century): Historically, African American graveyards were frequently targeted by resurrectionists, individuals who exhumed bodies to supply medical schools for anatomical studies. These acts, while criminal, were indirectly supported by the medical establishment due to the demand for cadavers.

4. The Immunocontraception Research (1970s): In the 1970s, some 10,000 women in 13 U.S. states—predominantly Black and Hispanic—were unknowingly included in contraceptive research. They were given an experimental shot that had dangerous side effects, all without their informed consent.

5. Lead Paint Studies (1990s): In the 1990s, a controversy erupted over lead paint studies conducted by the Kennedy Krieger Institute in Baltimore. Researchers intentionally exposed Black children to varying levels of lead to study its effects, jeopardizing the health and well-being of these unsuspecting participants.

The Lingering Effects and the Path Forward: The exploitation of Black bodies in medical research has created a deep-seated mistrust of the medical community among many Black Americans. The ramifications of this history persist today, influencing Black individuals’ decisions about seeking healthcare, participating in research, and getting vaccinated.

This history serves as a reminder of the importance of ethics, transparency, and respect for individual autonomy in medical research. In the case of Henrietta Lacks and countless others, there’s a moral imperative to ensure that the medical field learns from its past, making genuine efforts to redress historical wrongs and to prevent future injustices.

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