Henrietta Lacks changed the course of medicine without ever being given the choice to take part in it. In January of 1951, Henrietta, a young Black mother of five, sought treatment at Johns Hopkins Hospital after experiencing abnormal vaginal bleeding. She was diagnosed with cervical cancer. During her treatment, samples of her cancerous tissue were sent to Dr. George Otto Gey’s laboratory and cultured without her knowledge or consent. Henrietta passed away at the age of 31, but her cells did something no other human cells had ever done before. Referred to as “HeLa cells,” her cancer cells became the first human cells that researchers could stably maintain and reproduce in a laboratory.
The ability of HeLa cells to keep dividing comes partly from an enzyme called telomerase. Most human cells can only divide a set number of times. Each division shortens the telomeres, the small protective ends of chromosomes, until the cell eventually reaches its limit. HeLa cells maintain telomerase activity, which helps prevent their telomeres from becoming critically short and allows the cell line to continue dividing. Her cells also contain HPV-18 DNA, which encodes E6 and E7 proteins that weaken the cell’s normal defenses and allow cancerous cells to keep multiplying when they should have stopped. Research has shown that the continued activity of HPV-18 E6 and E7 helped HeLa cells maintain their rapid growth. When researchers suppressed these proteins HeLa cells stopped growing and began to die.
For more than 70 years, Henrietta’s stolen cells have been used in thousands of studies and have contributed to the development of the HPV and polio vaccines, gene mapping, and even COVID-19 research. The NIH has identified more than 110,000 publications involving HeLa cells. Her story reflects a period in history in which the autonomy of patients, particularly those from marginalized groups, was frequently disregarded. The journey toward ethical reform in research has been slow and strenuous. For decades, the lack of standardized consent forms allowed researchers to use patients' samples with very few restrictions. A major change came with the introduction of the Common Rule in 1991, which established requirements involving institutional review boards, informed consent, and oversight for covered federally conducted or supported human-subject research.
Henrietta’s story became central to debates over whether existing protections were enough for research involving stored tissue, cell lines, and genomic information. In 2013, the National Institutes of Health (NIH) reached a landmark agreement with the Lacks family, granting the Lacks family a voice in reviewing requests for access to certain controlled HeLa genome data.
Jeri Lacks-Whye, Henrietta’s granddaughter and a spokesperson for the Lacks family, has spoken about the complex issues of her legacy. During her visit to the University of Wisconsin-Madison in February 2026, Jeri shared her sentiments of knowing her grandmother’s cells are stored in many major research labs in the world, while the family lived for decades struggling to afford medical care.
Jeri states, “We just had to keep the faith and make sure we don't think that we're beneath anyone, that we are equal, even though you may know more than me, we still can work together to accomplish a common goal.”
Jeri also stressed the importance of medical professionals recognizing their patients' humanity.
“Treat me the way I would like to be treated, as a human being, as a whole person, not as a specimen or just somebody that you can make a dollar off of.”
Jeri’s concerns and fear of exploitation are shared by many. In a focus group study of patients from several racial and ethnic backgrounds, participants discussed their concerns about donating biological samples for precision medicine research. Participants worried about where samples might go, what they could be used for, and whether someone else might profit from them without ever asking them again. Some participants drew a clear line between sharing their medical information and giving away a physical part of themselves. A participant from the South Asian focus group stated, “I don’t want to be Henrietta Lacks,” reflecting the fear of being left out of the story while their samples create value for others.
These concerns raise various questions of public health justice, including genetic privacy, informed consent, commercial profit, and whether patients and their communities should share in the benefits created from their biological materials. In 2023, the Lacks’ estate reached a legal settlement with Thermo Fisher Scientific, a biotechnology company that had commercialized products involving HeLa cells. The settlement was confidential and did not publicly establish ownership rights over HeLa cells. For current and future healthcare practitioners, researchers, policymakers, and public health professionals, the story of Henrietta Lacks serves as a stark reminder that medical excellence cannot exist without ethical integrity. Her cells contributed to the advancement of biomedical research, but the way they were obtained and used also exposed failures in consent, communication, respect, and justice.
Honoring Henrietta Lacks means remembering both the discoveries her cells made possible and the harm her family endured. Her story reminds us that scientific research should never cross the boundary of valuing a breakthrough more than the human being behind it.
Written by: Ifeanyi Igboaka, PharmD | Pharmacogenomics and Health Equity Researcher
References
Beskow, L. M. (2016). Lessons from HeLa cells: The ethics and policy of biospecimens. Annual Review of Genomics and Human Genetics, 17, 395–417.
DeFilippis, R. A., Goodwin, E. C., Wu, L., & DiMaio, D. (2003). Endogenous human papillomavirus E6 and E7 proteins differentially regulate proliferation, senescence, and apoptosis in HeLa cervical carcinoma cells. Journal of Virology, 77(2), 1551–1563.
Ivanković, M., Ćukušić, A., Gotić, I., Škrobot, N., Matijašić, M., Polančec, D., & Rubelj, I. (2007). Telomerase activity in HeLa cervical carcinoma cell line proliferation. Biogerontology, 8(2), 163–172.
Lee, S. S.-J., Cho, M. K., Kraft, S. A., Varsava, N., Gillespie, K., Ormond, K. E., Wilfond, B. S., & Magnus, D. (2019). “I don’t want to be Henrietta Lacks”: Diverse patient perspectives on donating biospecimens for precision medicine research. Genetics in Medicine, 21(1), 107–113.
National Institutes of Health. (2025). The NIH-Lacks Family Agreement. Accessed 30 July 2026.
National Institute of Health Office of Science Policy. (2022) HeLa Cells: A Lasting Contribution to Biomedical Research. Accessed 30 July 2026.
Smith, J. D., Birkeland, A. C., Goldman, E. B., Brenner, J. C., Carey, T. E., Spector-Bagdady, K., & Shuman, A. G. (2017). Immortal life of the Common Rule: Ethics, consent, and the future of cancer research. Journal of Clinical Oncology, 35(17), 1879–1883.
Strecker, C. (2026). 75 years ago, her cells were taken without consent. Today her family honors her legacy to make sure it never happens again. The Daily Cardinal.
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