I composed medical school essays beneath the watchful portrait of Johns Hopkins, the first benefactor of Johns Hopkins University, at his namesake’s East Baltimore hospital. Though he created an incredible medical and educational legacy, the university reports that Johns Hopkins’ personal documents were lost or destroyed which leaves current scholars an incomplete picture of Hopkins’ beliefs and attitudes [1]. Reflecting on the institution’s mysterious philanthropist, I silently contemplated the legacy of another individual connected to the institution’s history: Henrietta Lacks. 

In February 1951, Johns Hopkins gynecologist, Dr. Howard Jones removed and saved tumor cells from Henrietta Lacks without her consent, a practice which was standard and legal at the time. These cells, nicknamed “HeLa” cells, were first cultured by Dr. George Gey who might have used HeLa cells in his cancer and virus research [2]. Again, it is true that these individuals complied with legalized practices that did not require a patient’s knowledge or consent in the 1950s. It is also true that the HeLa cell line has saved countless lives across the world. Just as the HeLa line continues to provide valuable advances in research and medicine, the practices behind these advances also need to constantly evolve and re-evaluate healthcare accessibility, equality, and patient rights.

Dr. Gey never found a stable cell line to successfully conduct his research until Dr. Jones delivered cells from Mrs. Lacks’ cervical tumor [2]. Maintaining a stable cell line, defined as a genetically homogenous cell population, requires cells to divide faster than they die. Using Mrs. Lacks’ cervical tumor, Dr. Gey isolated a single cell and provided the biochemical conditions and nourishment for it to divide into identical progeny cells, indefinitely. In particular, Dr. Gey noted the HeLa line doubled in population every 20 to 24 hours and continued growing even after Lacks passed away in October 1951, a few months after her initial February appointment with Dr. Jones [2, 3]. Scientists still use the HeLa line today to perform research that requires human cells. Since her death, studies estimate that scientists have cultured more than 50 million metric tons of HeLa cells [3]. 

Today, nearly 70,000 studies across the world have used the HeLa line, notably to develop polio and COVID-19 vaccines [4]. The HeLa line has even garnered three Nobel awards for scientists developing vaccinations against cervical cancer in 2008, discovering the fundamental biological process behind cell aging in 2009, and inventing a microscope that could visualize how viruses infect cells in 2014 [4, 5]. Altogether, a 2022 California Alameda Health System article estimates discoveries using HeLa cells have saved over 10 million lives around the world [6]. 

Although the HeLa line has garnered scientific success, their history and current use raise questions about patient rights and bioethics. In 2013, a European research group released the HeLa genetic sequence publicly [7]. Though compliant with legal procedures and widely common for other cell lines, releasing Henrietta Lacks’ genetic information raised discussions about privacy and informed consent for her living family who share her genetic information [7]. The researchers immediately withdrew the dataset. Next, a director from the National Institutes of Health worked with the Lacks estate to find a mutually agreeable solution, but the story aptly drew attention towards the American healthcare system’s historic mistreatment of African Americans such as the Tuskegee syphilis study.

In 1932, the United States Public Health System withheld widely available penicillin treatments to Black men with syphilis in order to investigate the disease’s progression [3, 8]. The government settled financially with participants in 1974, and then President Bill Clinton issued a formal apology in 1997 [8]. However, one qualitative study suggests that some African American adults still mistrust national healthcare institutes due to this event [9]. The article’s first author Dr. Darcell Scharff, a professor at the Saint Louis University College for Public Health and Social Justice, helped publish this study that collected African American individuals’ beliefs and experiences with healthcare research. Though we should not and cannot generalize the study’s personal testimonies or broad conclusions to an entire population, participants’ pessimistic stories highlight important, individual perspectives that deserve recognition and attention [9].

Moving forward, the United States healthcare system must constantly re-evaluate their legislature, practices, and cultural competencies surrounding patient trust and bioethics. To recognize and celebrate Henrietta Lacks’ momentous scientific contributions, the  Johns Hopkins University currently awards scholarships for inner city students, hosts bi-annual conferences on medical ethics, and plans to construct a building in 2025, all in her name [10, 11, 12]. 

The Johns Hopkins institution has never profited from the HeLa line, but other private industries do [1]. Currently, the Lacks estate is suing the company Thermo Fisher Scientific which sells 12 HeLa derived products according to a 2021 lawsuit document [13]. In addition to returning the HeLa profits to the Lacks estate, the plaintiffs hope to negotiate future permissions over the HeLa line and create a designated trust for the estate within the company [13]. As of August 2023, the Lacks family privately settled with Thermo Fischer Scientific and filed another suit with Ultragenyx, a California biotechnology company [14]. Their unprecedented actions and recent out-of-court success have the potential to revolutionize the way patient samples are collected, experimented with, and valued for compensation.

References Cited:

Cover Image:  Deerinck T. Hela cells: Image details [Internet]. 2011 [cited 2023 Aug 12]. Available from: https://visualsonline.cancer.gov/details.cfm?imageid=11867

[1]: Reexamining the history of our founder, Johns Hopkins [Internet]. 2020 [cited 2023 Aug 12]. Available from: https://www.hopkinsmedicine.org/news/articles/2020/12/reexamining-the-history-of-our-founder-johns-hopkins

[2]: The Legacy of Henrietta Lacks [Internet]. 2022 [cited 2023 Aug 12]. Available from: https://www.hopkinsmedicine.org/henriettalacks

[3]: Khan FA. The Immortal Life of Henrietta Lacks. Journal of the Islamic Medical Association of North America. 2011 Aug 10;43(2):93–4. doi:10.5915/43-2-8609

[4]: Landry JJ, Pyl PT, Rausch T, Zichner T, Tekkedil MM, Stütz AM, et al. The Genomic and Transcriptomic Landscape of a HeLa Cell Line. G3 (Bethesda). 2013;3(8):1213–24. doi:10.1534/g3.113.005777

[5]: Significant Research Advances Enabled by HeLa Cells [Internet]. U.S. Department of Health and Human Services; 2022 [cited 2023 Aug 12]. Available from: https://osp.od.nih.gov/hela-cells/significant-research-advances-enabled-by-hela-cells/#1960s

[6]: Henrietta Lacks’ Immortal Impact on Modern Medicine [Internet]. 2022 [cited 2023 Aug 12]. Available from: https://www.alamedahealthsystem.org/henrietta-lacks

[7]: Beskow LM. Lessons from HeLa Cells: The Ethics and Policy of Biospecimens. Annual Review of Genomics and Human Genetics. 2016;17(1):395–417. doi:10.1146/annurev-genom-083115-022536

 [8]: The Syphilis Study at Tuskegee Timeline [Internet]. Centers for Disease Control and Prevention; 2022 [cited 2023 Aug 12]. Available from: https://www.cdc.gov/tuskegee/timeline.htm

[9]: Scharff DP, Mathews KJ, Jackson P, Hoffsuemmer J, Martin E, Edwards D. More than Tuskegee: Understanding Mistrust about Research Participation. Journal of Health Care for the Poor and Underserved. 2010 Mar 15;21(3):879–97. doi:10.1353/hpu.0.0323

[10]: Klitzman R. Henrietta Lacks’ Family’s Lawsuits: Ethical Questions and Solutions. Trends in Biotechnology. 2022 Mar 25;40(7):769–72. doi:10.1016/j.tibtech.2022.02.009

[11]: Honoring Henrietta Lacks [Internet]. [cited 2023 Aug 12]. Available from: https://www.hopkinsmedicine.org/henrietta-lacks/honoring-henrietta-lacks

[12]: Johns Hopkins Presents Initial Design of Building Named in Honor of Henrietta Lacks to Baltimore’s Urban Design and Architecture Advisory Panel [Internet]. 2022 [cited 2023 Aug 12]. Available from: https://www.hopkinsmedicine.org/news/newsroom/news-releases/johns-hopkins-presents-initial-design-of-building-named-in-honor-of-henrietta-lacks-to-baltimores-urban-design-and-architecture-advisory-panel

[13]: Civil Complaint and Request for Jury Trial Document 1 [Internet]. 2021 [cited 2023 Aug 12]. Available from: https://www.courthousenews.com/wp-content/uploads/2021/10/henrietta-lacks-thermo-fisher.pdf[14]: Staff CB. Henrietta Lacks’ Family Sues Ultragenyx for Profiting Off “HeLa Cells” without Permission [Internet]. CBS Interactive; 2023 [cited 2023 Aug 12]. Available from: https://www.cbsnews.com/baltimore/news/henrietta-lacks-family-sues-ultragenyx-for-profiting-off-hela-cells-without-permission/