Disparities, or differences, in the incidence and outcomes of cervical cancer exist. Our current understanding of cervical cancer and human papillomavirus were born of a situation that parallels some of the same issues that exist today, while highlighting the reasons behind changes to rules about informed consent. One cannot write about cervical cancer without discussing Henrietta Lacks. Henrietta Lacks was an African American woman who was treated for her cervical cancer in 1951 at Johns Hopkins Hospital in Baltimore, one of the few institutions that would provide care for low-income people of color at the time (Johns Hopkins medicine [JHM], n.d.). The tumor was biopsied and then Lacks underwent surgery and radiation. However, she ended up dying from the cancer months after diagnosis, in a segregated ward (Kaylin, 2006). On autopsy, it was discovered that the aggressive cancer had metastasized throughout her body (Sands, 2010). According to JHM (n.d.), during that same timeframe researchers were trying desperately to grow human cell lines from samples taken from patients, albeit unsuccessfully. Informed consent was not something that was routinely obtained or required. When Lack’s doctor biopsied her tumor, the cells were sent to a researcher, Dr. Gey, who tried to grow them out, just as he had done to countless other tumor samples. Until these cells, attempts at culturing would end with cell death within 36 hours. In the case of Ms. Lacks, her cells rapidly multiplied, and in fact, continue to do so today. They have been named HeLa cells for the first two initials of Henrietta Lacks first and last name (JHM, n.d.). HeLa cells have been used for medical research on HIV, cancer, in vitro fertilization, and to create vaccines such as HPV, polio, and COVID-19 (Cramer, 2021).
So why did HeLa cells survive and replicate when no other human cell lines had? The first thing was that they were infected with the virus human papillomavirus (HPV). HPV acts by inserting its DNA into the host cell nucleus where the chromosome (cell DNA) is located, thereby creating mutations that might bypass the body’s defenses or make infected cell lines more resistant to them (Kaylin, 2006). In the case of Henrietta Lacks, the virus caused mutations that interrupted the normal cell p53 function responsible for repairing mutations in normal body cells and stopping tumor growth, which resulted in unchecked division and growth (Kaylin, 2006). All DNA viruses (RNA viruses work a little different) cause mutations this way, and the discoveries obtained from working with HeLa cells eventually led to knowledge about the link between a number of different viral infections and cancers, such as hepatitis B and C to hepatocellular carcinoma, Epstein Barr virus (EBV) to Burkitt lymphoma and nasopharyngeal carcinoma, and human T lymphotropic virus type I to adult T cell leukemia/lymphoma (Kaylin, 2006). Second, Henrietta Lacks was also infected with syphilis, postulated to be a gift from an unfaithful husband, and this caused changes in her cervix and immune function that predisposed her to HPV infection and subsequent aggressive tumor growth (Sands, 2010). Third, HeLa cells have overactive telomerase, which is an enzyme that adds repeating sequences on the end of chromosomes, thus making them immortal (Ivanković et al., 2007). Normal chromosomes have telomeres at the end, which have protective functions, and become shorter each time a cell divides and replicates (the definition of aging interestingly). Once the chromosome becomes short enough, this serves as a shut-off for cell replication, and prevents out-of-control growth, such as what occurs with tumors (Ivanković et al., 2007; Sands, 2010).
This all relates back to health disparities because of what happened to Henrietta Lacks immortal cell line. Let me start by saying that the initial researcher that grew out HeLa cells never profited from them (Sands, 2010). He freely shared the cells around the world. Again, obtaining informed consent was not standard in that time (JHM, n.d.). Lacks presented to an institution willing to provide care for African Americans (unfortunately rare then), and she received full treatment for her cervical cancer (JHM, n.d.). The cervical cancer’s particularly aggressive nature is probably what led to its immortality, and because the cancer tolerated pretty much any growth condition, growing conditions could be experimented with and this led to knowledge about culturing less hardy human cells later (Sands, 2010). According to Stump (2014), eventually over 11,000 medical patents would exist on HeLa cells, and they would be mass produced and sold by for-profit institutions. Her entire genetic code was mapped out and posted on the internet, potentially violating the privacy of living relatives. The family was not informed of the cell line until a news article outed this information. Researchers also obtained blood samples from family members without explaining the reason, and family were allowed to believe they were being tested for some condition, rather than as subjects of study. Biotech companies commercialized and then profited off the cell line, all the while the Lacks family were never compensated (Stump, 2014).
Today, health disparities continue for racial minorities and low-income women, both of which are embodied by the life of Henrietta Lacks. According to Olusola et al. (2019), African American women are more than 60% more likely than Caucasians to get cervical cancer and they are more likely to be diagnosed at later stages. Hispanic women have even higher rates of cervical cancer and poorer outcomes, and this difference cannot be accounted for entirely by differences in screening rates. Low-income women are less likely to undergo routine screening per recommendations due to inability to pay, and so are more likely to be diagnosed at later stages of disease. The same can be said of women who live in rural or remote areas. They forgo routine screening due to geographical location, and as a result, present with later stages of cervical cancer (Olusola et al., 2019). Bryant (2021) described various factors which may contribute to these health disparities, including cultural norms such as who can do a pelvic exam and whether or not this causes shame, implicit bias such as the provider assuming that a lesbian would not need screening for HPV because she does not engage in vaginal-penile sex, healthcare system issues such as access to affordable care, and sociocultural issues such as poor health literacy or lack of transportation to healthcare visits.
Bryant, A. (2021, Sept 13). Racial and ethnic disparities in obstetric and gynecologic care and role of implicit biases. UpToDate. Retrieved Nov. 16, 2021, from https://www.uptodate.com/contents/racial-and-ethnic-disparities-in-obstetric-and-gynecologic-care-and-role-of-implicit-biases?search=health%20disparities%20cervical%20cancer&source=search_result&selectedTitle=6~150&usage_type=default&display_rank=6
Cramer, M. (2021, Oct 13). Henrietta Lacks, whose cells were taken without her consent, is honored by W.H.O. The New York Times. Retrieved Nov. 16, 2021, from https://www.nytimes.com/2021/10/13/science/henrietta-lacks-cells-who.html
Ivanković, M., Cukusić, A., Gotić, I., Skrobot, N., Matijasić, M., Polancec, D., & Rubelj, I. (2007). Telomerase activity in HeLa cervical carcinoma cell line proliferation. Biogerontology, 8(2), 163–172. https://doi.org/10.1007/s10522-006-9043-9
Johns Hopkins Medicine. (n.d.). Honoring Henrietta: The legacy of Henrietta Lacks. Retrieved Nov 16, 2021, from https://www.hopkinsmedicine.org/henriettalacks/
Kaylin, J. (2006). The virus behind the cancer. Yale Medicine magazine. Retrieved Nov 16, 2021, from https://medicine.yale.edu/news/yale-medicine-magazine/the-virus-behind-the-cancer/
Olusola, P., Banerjee, H.N., Philley, J.V., & Dasgupta, S. (2019). Human papilloma virus-associated cervical cancer and health disparities. Cells, 8(6), 622. https://doi.org/10.3390/cells8060622
Sands, J. M. (2010). The Immortal Life of Henrietta Lacks. Jurimetrics, 51(2), 131–140.
Stump, J. L. (2014). Henrietta Lacks and the HeLa cell: Rights of patients and responsibilities of medical researchers. History Teacher, 48(1), 127–180.