Henrietta Lacks’s Cells Transform Medical Research Ethics

Seventy-five years ago, Henrietta Lacks unknowingly became a pivotal figure in medical history when doctors at Johns Hopkins Hospital harvested her cells without her consent. Lacks, an African American woman diagnosed with cervical cancer, would later be the source of HeLa cells, which have significantly impacted research and medical advancements. These cells have contributed to the development of vaccines for polio and HPV, as well as treatments for various conditions including HIV/AIDS and leukemia.

The legacy of Lacks’s cells continues to influence research today. Local scientists are reflecting on the importance of HeLa cells in their work, highlighting both the scientific breakthroughs and the ethical considerations that have emerged from her story. “To the modern researcher, the fact that cells were taken and established into an immortalized, forever-growing cell line from a patient that didn’t know that happened is astounding,” said Cigall Kadoch, an associate professor of pediatric oncology at the Dana-Farber Cancer Institute and Harvard Medical School.

Lacks’s story gained widespread attention with the publication of Rebecca Skloot‘s book, “The Immortal Life of Henrietta Lacks,” in 2010. The narrative took on new dimensions in recent years, especially after her family filed a lawsuit against Thermo Fisher Scientific. They claimed the company profited significantly from a medical system that historically exploited Black individuals. In 2023, Lacks’s descendants reached a confidential settlement with the biotechnology company, as well as with Novartis earlier this month.

Henrietta Pleasant was born in 1920 in Roanoke, Virginia. She married David “Day” Lacks in 1941 and had five children. Lacks first visited Johns Hopkins on February 1, 1951, reporting a “knot” in her cervix. At that time, Johns Hopkins was one of the few hospitals that offered public medical care to Black patients. Unfortunately, it was also common practice for medical professionals to conduct research on patients without their knowledge, particularly among those from poorer backgrounds.

After a biopsy revealed cervical cancer, Lacks signed a consent form for any necessary procedures. During her radium treatment, samples from both her tumor and healthy tissue were taken by Dr. George Gey for research. He named the cultured cells HeLa, derived from the first two letters of Lacks’s first and last names. Gey’s work led to the first immortal human cell line, overcoming previous scientific challenges in keeping cells alive outside the body.

The impact of HeLa cells has been profound, facilitating numerous scientific discoveries. Dr. Sabrina Assoumou, an infectious disease physician at Boston Medical Center, credits her clinical research on HIV to the foundational work conducted with HeLa cells. Assoumou is currently involved in the dissemination of a long-acting HIV medication, Sunlenca, which has gained approval from the FDA. She aims to improve patient access, particularly for marginalized communities.

“HeLa cells have been really critical for many scientific discoveries, but especially for HIV in terms of understanding how infection actually works,” Assoumou explained. During the early days of the HIV/AIDS epidemic, researchers noted that HeLa cells did not become infected in the same way as immune cells. This led to experiments that altered the DNA of HeLa samples, enhancing understanding of the virus and its implications for treatment.

Kadoch, who works directly with HeLa cells at Dana-Farber, noted that advancements in gene sequencing have revealed the genetic underpinnings of various cancers. “Cancer is not one disease, but a very diverse, heterogeneous collection of many different diseases,” she said. However, establishing cell lines for all types of cancer remains challenging. Kadoch emphasized that environmental factors can alter cells during the culturing process, meaning “no two HeLa cell lines from two different labs are the same.”

The legacy of HeLa cells extends beyond scientific advancements. Lacks’s story has prompted a reevaluation of ethical standards in research, particularly regarding informed consent. Assoumou has contributed to a course at Boston Medical Center aimed at educating medical interpreters about the importance of patient-centric approaches in clinical trials. The course discusses historical injustices, such as the Tuskegee syphilis study, which allowed Black patients to suffer without treatment for the sake of research.

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

Kadoch echoed this sentiment, stating that informed consent is essential for ensuring diversity among research participants. “We’ll do a better job for our worldly effort against cancer if we understand the heterogeneous repertoire of individuals that get these diseases,” she said. She also emphasized the importance of recognizing the contributions of patients and their families in research.

As discussions around ethics and informed consent continue, researchers are reminded of the profound impact of Henrietta Lacks’s cells on medical science and the ongoing need for accountability in research practices. Lacks’s legacy serves as a reminder of the human stories behind scientific progress, urging researchers to acknowledge and honor those who have unknowingly contributed to advancements in medicine.