Henrietta Lacks’s Immortal Cells: Legacy Reshapes Research Ethics

Seventy-five years ago, Henrietta Lacks unwittingly became a pivotal figure in the history of medical research. In 1951, doctors at Johns Hopkins Hospital harvested cells from Lacks, an African American patient suffering from cervical cancer, without her knowledge or consent. These cells, now known as HeLa cells, have since contributed to numerous medical breakthroughs, including the development of vaccines for polio and HPV, as well as treatments for HIV/AIDS, leukemia, and influenza. Although Lacks passed away in 1951, her cellular legacy continues to influence research and ethical standards in the medical community.

The story of Lacks gained widespread attention following the 2010 publication of “The Immortal Life of Henrietta Lacks” by Rebecca Skloot. Locally, her legacy was further spotlighted when her family filed a lawsuit against Thermo Fisher Scientific, claiming the company profited from a racially biased medical system. In 2023, her descendants reached a confidential settlement with the biotechnology firm, as well as with the Swiss pharmaceutical giant Novartis earlier this year.

Born in 1920 in Roanoke, Virginia, Lacks worked on a tobacco farm before marrying David “Day” Lacks in 1941 and raising five children. She first visited Johns Hopkins on February 1, 1951, complaining of a “knot” in her cervix. The hospital, one of the few providing public medical care for Black patients at the time, allowed doctors to conduct research on public ward patients without their knowledge. After a biopsy revealed cervical cancer, Lacks did not initially inform her family of her diagnosis, as she wished to spare them distress.

During her treatment, Lacks consented to any necessary operations, which led to samples being taken from both her tumor and healthy cervical tissue for Dr. George Gey to culture in his laboratory. He named the cells “HeLa” after the first two letters of her first and last names. Remarkably, these cells not only survived but multiplied rapidly, marking a significant breakthrough in cell culture techniques. Gey shared his findings with scientists worldwide, yet Lacks was never acknowledged in the scientific community.

Researchers have since recognized the profound impact of HeLa cells on their work. Dr. Sabrina Assoumou, an infectious disease physician at Boston Medical Center, credits her clinical research on HIV to the foundational work involving HeLa cells. She is currently involved in disseminating a long-acting HIV medication, approved by the FDA under the brand name Sunlenca, with the goal of making it accessible for home administration, particularly for marginalized communities.

“HeLa cells have been critical for many scientific discoveries, especially in understanding how HIV infection works,” Assoumou noted. During the early stages of the HIV/AIDS epidemic, researchers found that HeLa cells did not become infected by the virus in the same way as immune cells. This discovery allowed for significant advancements in drug development, ultimately improving patient outcomes.

Dr. Cigall Kadoch, an associate professor of pediatric oncology at Dana-Farber Cancer Institute and Harvard Medical School, emphasized that advancements in gene sequencing have led to a better understanding of various cancers. Her lab utilizes HeLa cells to explore the genetic underpinnings of these diseases. “Cancer is not a single disease; it’s a diverse collection of many different diseases,” Kadoch explained.

Despite the invaluable contributions of HeLa cells, establishing cell lines for all types of cancer remains challenging. Kadoch highlighted that human cells can change in laboratory conditions, leading to variations between HeLa cell lines from different labs. “We often say no two HeLa cell lines from two different labs are the same,” she added.

The ethical implications of Lacks’s story have prompted a reevaluation of informed consent in research. Assoumou played a role in developing a course at Boston Medical Center aimed at educating medical interpreters about the historical context of medical mistrust, including the case of Lacks and the infamous Tuskegee syphilis study. This initiative seeks to empower interpreters to advocate for patients who may not be proficient in English.

“We’ve learned and developed procedures to be better researchers,” Assoumou stated. “I can say that today I’m a better researcher because of the practices that were established after what happened to Lacks.”

Kadoch believes that informed consent is essential for ensuring diversity among research participants. As cancer has genetic variations that differ across backgrounds, understanding these differences can enhance efforts to combat the disease. “We’ll do a better job in our fight against cancer if we comprehend the diverse repertoire of individuals affected by these diseases,” she concluded.

As the legacy of Henrietta Lacks continues to shape the landscape of medical research, it serves as a reminder of the importance of ethical standards and the necessity of recognizing the contributions of individuals who unwittingly advance scientific knowledge.