When she was 30 years old, Henrietta Lacks was diagnosed with cervical cancer at Johns Hopkins hospital. During a routine cancer treatment, one of her doctors took a sample of her tumor and gave it to Dr. George Gey. Without her knowledge, Dr. Gey sent her tumor sample to a laboratory where scientists have been trying to grow cells in culture. Despite decades of efforts, these scientists had little success. However, Henrietta’s cells were unlike any other—her cells didn’t die, continuing to multiply and didn’t age. Although Henrietta died of cervical cancer at the age of 31, her cells remained alive for another 60 years. Today, Henrietta Lacks’ cells are still growing in laboratories across the world.
HeLa Cells
HeLa cells, named after the first two letters of Henrietta Lacks’ first and last name, were the first human cells to be grown outside the body. Because HeLa cells are immortal, they have become invaluable for scientific research. HeLa cells were used in research that led to the development of chemotherapy treatments, in vitro fertilization, and the creation of the first polio vaccine. There are so many HeLa cells being used for research that it is estimated that the total weight of all HeLa cells ever grown is more than 55 million tons. HeLa cells have been used in more than 110,000 scientific publications, and there are almost 11,000 patents involving HeLa cells.
Unseen Profits
HeLa cells were the first human biological materials ever sold. Today, a vial of HeLa cells can be bought online for about $250. Although Henrietta Lacks’ cells helped create a multi-billion dollar industry, her family saw none of the profits. In fact, the Lacks family only learned about HeLa cells 25 years after Henrietta’s death. Her family wondered, if Henrietta made thousands of contributions to modern medicine, why is it that her children could not afford healthcare?
Johns Hopkins claims the institution never sold HeLa cells or profited from the discovery or the distribution of the cell line. Rather, the institution offered the cells “freely and widely for scientific research.” Johns Hopkins also does not own the rights to the HeLa cell line.
“Having reviewed our interactions with Henrietta Lacks and with the Lacks family over more than 50 years, we found that Johns Hopkins could have—and should have—done more to inform and work with members of Henrietta Lacks’ family out of respect for them, their privacy and their personal interests. Though the collection and use of Henrietta Lacks’ cells in research was an acceptable and legal practice in the 1950s, such a practice would not happen today without the patient’s consent.”
Informed Consent
At the time Henrietta Lacks was treated for her cervical cancer, the concept of informed consent did not exist. Unfortunately, taking tissue samples without the patient’s knowledge was a common practice, especially among Black Americans in the 1950s. Due to segregation, Black Americans also had to wait longer for medical attention and received less treatment than White Americans.
“Black scientists and technicians, many of them women, used cells from a black woman to help save the lives of millions of Americans, most of them white. And they did so on the same campus—and at the very same time—that state officials were conducting the infamous Tuskegee syphilis study.” – from The Immortal Life of Henrietta Lacks, p.97
Unfortunately, Henrietta Lacks was not the only one who had samples taken without her consent. In the 1970s, her own children were told they were being screened for the same type of cancer that killed their mother. Instead, they were actually being studied to learn more about their mother’s cells. Furthermore, in 2013, researchers sequenced the HeLa genome, making the Lacks family’s DNA public without their consent.
Henrietta Lacks is considered the mother of modern medicine. Her cells have been invaluable for research, both in scientific discoveries and for the development of modern research ethics. Today, the Federal Policy for the Protection of Human Subjects, a.k.a the Common Rule, requires doctors and scientists to obtain informed consent for all research involving human-subjects. Informed consent is defined as “the process in which a health care provider educates a patient about the risks, benefits, and alternatives of a given procedure or intervention. The patient must be competent to make a voluntary decision about whether to undergo the procedure or intervention. Informed consent is both an ethical and legal obligation of medical practitioners in the US and originates from the patient’s right to direct what happens to their body.”
Scientists are also required to protect patient identities. For example, samples are made anonymous rather than being named based on a patient’s initials.
An Immortal Legacy
Henrietta Lacks was more than just a woman with cancer. Henrietta was born in Roanoke, Virginia in 1920 with the name Loretta Pleasant. No one really knows how she got the name Henrietta. She was a tobacco farmer and a mother of five children: Lawrence, Elsie (Lucile), David Jr. (Sonny), Deborah, and Joseph (Zakariyya). Those who knew Henrietta said she was the prettiest woman in town, with beautiful eyes and a beautiful smile.
The story of Henrietta Lacks has been published in the 2010 biography The Immortal Life of Henrietta Lacks by Rebecca Skloot. The book has also been adapted into a documentary of the same title.
The Henrietta Lacks Foundation provides financial assistance to families, especially minorities, who were involved in historic research without their knowledge. So far, the foundation has awarded more than 80 grants.
References
- The Amazing Henrietta Lacks. Henrietta Lacks Legacy Group. (n.d.). Retrieved March 7, 2023, from https://henriettalackslegacygroup.org/the-amazing-henrietta-lacks/about-henrietta/
- Belluz, J. (2017, April 21). The new oprah movie about Henrietta Lacks reopens a big scientific debate. Vox. Retrieved March 7, 2023, from https://www.vox.com/science-and-health/2017/4/21/15275514/oprah-henrietta-lacks-hbo-consent-biospecimens
- Butanis, B. (2022, February 18). The legacy of henrietta lacks. Johns Hopkins Medicine, based in Baltimore, Maryland. Retrieved March 7, 2023, from https://www.hopkinsmedicine.org/henriettalacks/
- Dineen, K. (n.d.). Women in science: Remembering henrietta lacks. The Jackson Laboratory. Retrieved March 7, 2023, from https://www.jax.org/news-and-insights/jax-blog/2016/august/women-in-science-remembering-henrietta-lacks
- Khan FA. The Immortal Life of Henrietta Lacks. J IMA. 2011 Jul;43(2):93–4. doi: 10.5915/43-2-8609. Epub 2011 Aug 10. PMCID: PMC3516052.
- NPR. (2010, February 2). ‘Henrietta Lacks’: A donor’s Immortal legacy. NPR. Retrieved March 7, 2023, from https://www.npr.org/transcripts/123232331
- Shah P, Thornton I, Turrin D, et al. Informed Consent. [Updated 2022 Jun 11]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2022 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK430827/
- Smithsonian Institution. (2018, June 6). National Portrait Gallery presents a portrait of Henrietta Lacks, a co-acquisition with the National Museum of African American History and Culture. National Museum of African American History and Culture. Retrieved March 7, 2023, from https://nmaahc.si.edu/about/news/national-portrait-gallery-presents-portrait-henrietta-lacks-co-acquisition-national
- Traversino, K. (2020, November 11). Henrietta Lacks and the evolution of bioethics. Morning Sign Out at UCI. Retrieved March 7, 2023, from https://sites.uci.edu/morningsignout/2020/11/11/henrietta-lacks-and-the-evolution-of-bioethics/
- U.S. Department of Health and Human Services. (2022, October 3). Significant research advances enabled by Hela Cells. National Institutes of Health. Retrieved March 7, 2023, from https://osp.od.nih.gov/hela-cells/significant-research-advances-enabled-by-hela-cells/
- Zielinski, S. (2010, January 22). Henrietta Lacks’ ‘immortal’ cells. Smithsonian Magazine. Retrieved March 7, 2023, from https://www.smithsonianmag.com/science-nature/henrietta-lacks-immortal-cells-6421299/