Content warning: This article may be traumatizing for our Black community members. This article includes discussion and examples of the historical and current experiences of anti-Black racism in healthcare institutions. Non-consensual removal of biological material, general violence and discrimination are included. Please prioritize your personal well-being in your decision to read this post. We highly encourage allies to continue reading. It is our collective responsibility to learn Black history and listen to Black stories. We must acknowledge the anti-Black racism that saturates our social institutions and take sincere action to dismantle the racism embedded in these institutions.
Hi readers, my name is Han (she/they) and I am the author. I wrote this piece as a tribute to Black History Month and it is critical to acknowledge that I am a white-passing woman writing about Black experiences from a scientific context. I sit at the intersection of white settler and Haudenosaunee ancestry, but am a white-passing individual. Importantly, I can never understand the experiences of Black folks as I do not live in a Black body and I do not intend to speak on behalf of diverse Black communities. It is my intention to inform and share research about the ongoing mistreatment of Black individuals and the racism perpetuated by our healthcare systems. While this article focuses on Black women, I want to acknowledge the negative health impacts for all racialized folks, especially Indigenous Peoples, as a result of the systemic racism within Western medical institutions.. My intention is to share the knowledge and lessons that I have access to because of my education and time availability. I hope not to detract from Black joy, but remind non-Black folks that it is our fight too. It is not Black folks' responsibility to constantly educate non-Black folks about the constant mistreatment and violence they face. It is the responsibility of non-Black people to advocate for adequate care of our diverse Black communities that thrive in the face of ongoing unjust treatment.
Henrietta Lacks was a Black American mother of five. She grew up in Virginia working on a family owned tobacco farm. Henrietta is described and depicted as a devoted mother to her children and an extremely hard working community member, who always had the door open for anyone in her neighbourhood who needed a meal (1, 2). Her story is a familiar one to many racialized women and their experience in healthcare. Henrietta’s biological property was taken from her, without consent or compensation, in the name of science. Henrietta and her cells were the source of major medical advancements and neither her, nor her family, received the recognition or humanity that they deserved. Herein we detail Henrietta’s life and how her experience can be mirrored in healthcare systems today.
1951
Henrietta was living in Baltimore, Maryland, with her husband and five children. In January, four months after giving birth to her fifth child, she was referred to Dr. Howard Jones, a gynecologist at The Johns Hopkins Hospital (Hopkins). She was referred after she found a hard lump on her cervix and had been experiencing abnormal vaginal bleeding. Three months prior to her medical visit, there were no notes about any abnormalities associated with her reproductive organs. Days later, she was diagnosed with cervical cancer and encouraged to come in for treatment.
Up until this point in her life, Henrietta’s medical record was extensive, with multiple infections and illnesses documented and left untreated because she had never followed up. At this time, Hopkins was one of the rare hospitals that was willing to treat Black people.
Hopkins was established in 1889 as a ‘charity’ hospital focused on helping those who were low-income and ill. Its establishment, and Henrietta’s cervical cancer diagnosis, took place during the Jim Crow era, which extended from 1865 to 1968. While slavery was illegal, many laws existed that promoted and upheld segregation. Hopkins was no exception and maintained coloured-only wards, exam rooms, washrooms, and fountains.
It is not surprising Henrietta never sought treatment for her prior conditions considering many hospitals refused to treat Black folks, and those that did kept them in segregated environments. Segregation ensured Black folks structural marginalization in public institutions and perpetuates the belief that Black people are inferior to white people. During this time medical research routinely used Black folks without knowledge or consent. To Henrietta, instead of Hopkins feeling like a place where she would be cared for, the hospital probably felt like a sterile and unfamiliar place. Hospitals were predominantly white institutions – and whiteness did not represent safety or belonging for the Black community. For many Black folks during the time, avoiding hospitals and forgoing treatment likely felt like the safer and ‘healthier’ decision.
When Henrietta returned to Hopkins to receive her first radium treatment, a standard course of treatment for cancer at the time, a piece (biopsy) of her cervical tumor was taken without her knowledge or consent. In the 1950s, informed consent was not of particular importance in a research or treatment setting. It was standard to take samples from patients or experiment on patients without their knowledge or consent. In a 2010 interview on Fresh Air with Rebecca Skloot, the author of The Immortal Life of Henrietta Lacks (an in depth historical account of Henrietta's life and what happened with her family afterwards), she remarks on how the non-consensual removal of cervical samples was “absolutely standard” for all women during this time (3*). It’s important to highlight that Black women had a higher chance of being a victim of non-consensual removal of these tissues because of the dehumanization of Black women in a racist medical system; a necessary contextualization of Skloot’s remark.
Back at Hopkins, Henrietta Lacks’ biopsy was purposely given to George Gey, a cancer and virus researcher who was taking any and all cervical biopsies from patients in an attempt to grow and maintain the human cells in culture. Culturing cells involves the removal of cells from anything ‘living’ (ranging from animals and plants to yeast) and growing them in an artificial environment, typically a petri dish with liquid that has all the nutrients to promote sustainable growth. Scientists grow human cells in a lab to study how they function, understand the development of diseases and test different treatments without having to endanger living people. The cells that continue dividing are identical so experiments can be repeated and tested multiple times to make sure the outcomes are reliable.
In cell culture, these HeLa cells (for Henrietta Lacks and pronounced ‘hee-la’) began to grow, divide, and never stop; becoming the first line of immortal cells grown in a laboratory setting. Henrietta’s cells were unique because scientists had never before been able to maintain a line of human cells that could reliably divide and grow. Meanwhile, Henrietta had no knowledge that her cells were taken from her, let alone know about their unprecedented characteristics and their scientific implications. Henrietta, along with her family, would never be told about her stolen cells and the impact they would have on the scientific landscape. A hard working, devoted mother and friend was quickly reduced to a mass of efficiently dividing cells.
Henrietta’s health quickly deteriorated since her first visit to Hopkins in January. After successful radium and radiation treatments, she eventually returned to the hospital on three separate occasions concerned with how much pain she was in. She believed she had cancer again, but was dismissed and sent home. In July, X-rays confirmed her body was full of tumors and she was labelled inoperable. Even after this, she had to fight to stay at the hospital to receive treatment instead of driving to and from the hospital every day. By September, Henrietta was taken off cancer treatment medications and only given pain medication to make her death as comfortable as possible. She passed away on October 4, 1951, 10 months after her first visit (1).
Today, HeLa cells are cultured in laboratories across the globe and have been the backbone of many monumental scientific and biomedical discoveries. HeLa cells were the first immortal human cell line that were successfully cultured and maintained. This means that since their origin, the cells continue to grow and divide with no end in sight. Most cell lines can only divide a set number of times before they die, but HeLa cells are different. Because of this, these cells have been mass-produced and commercialized with significant profits; however, neither Henrietta nor her family ever received any financial compensation.
Worse, because Henrietta’s cells were taken without her knowledge, her family had no idea that her cells were being used and experimented on globally until 1973, 22 years after their inception (1, 2). Henrietta and her children lived in poverty for much of their lives; they had unreliable access to healthcare and required costly medications for multiple health conditions that they could not easily afford. Meanwhile, their mother’s cells helped improve the health of those who could afford it and poured money into the pockets of many. Deborah, Henrietta’s youngest daughter is quoted saying, “But I have always thought it was strange, if our mother cells done so much for medicine, how come her family can’t afford to see no doctors?” (1).
1973
In 1973, researchers approached the Lacks family (Henrietta’s husband and children) to take blood samples to map HeLa genes. Genetic mapping is used to identify specific genetic sequences that are linked to diseases. With a genetic map, scientists can identify if individuals are at a higher or lower risk for certain conditions and diseases. By taking blood samples of Henrietta’s husband and children, researchers could construct a HeLa gene map. The family was under the impression that they were being screened for cancer and would be notified about results. While the researchers did not actively lie, they were not transparent and did not cater to the family’s understanding of science and medicine. For years after, the family raised objections to the continuous use and publication of HeLa cell information, but remained largely ignored. Non-consensual medical treatment is intergenerational in the Lacks family (1).
2013
In 2013, the HeLa genome was published without the consent or knowledge of the family by a German research group. After privacy concerns and unhappiness were voiced by the family, the publication was removed from public access. The National Institute of Health, who was not associated with the published HeLa genome but was in the works of publishing a more detailed HeLa sequence, followed up with the family and established an agreement with the Lacks (4, 5) . In these talks, it was agreed that HeLa information would use a controlled-access strategy:
Researchers have to apply for permission and agree that all information and data collected was for biomedical research only.
Researchers would NOT contact the Lacks family.
Approval of requests go through a committee that include two Lacks family members; Veronica Spencer and David Lacks Jr. (selected by other family members).
Those who use the data must acknowledge Henrietta Lacks and her family.
HeLa cells have been involved in countless treatments, patents and medical technology revolutions since their inception. The study of virology, genetics, cancer, medical equipment and bacteria have all been improved from HeLa cell experimentation. These discoveries range from the polio vaccine development, in vitro fertilization techniques, genome mapping, and HPV vaccine production, each leading to reduced infections and prevalence of cervical cancer for girls and women. It is likely that someone you know has benefited from a HeLa-related discovery (1, 5).
However, we must remember that there is a person, a mother, a wife, a friend, behind these cells. Henrietta Lacks. It is insidious how easily we deflect and rationalize the erasure of a Black woman and her humanity by reducing her name and identity to a line of cells and scientific progress. We must say her name. We must confront the systemic racism that is woven into Henrietta’s story and how it continues to negatively impact the quality of care and access to health services that racialized people in North America receive today.
In this piece, I hope to have centred the story of Henrietta Lacks and her family. We owe an immense amount of scientific and healthcare progress to HeLa cells and more importantly, to Henrietta Lacks, and her family who continue to allow the use of these cells to improve the health and care of entire populations.
Learn about Rebecca Lee Crumpler who was the first African-American woman to become a doctor of medicine in the United States here.
*These sources do not specify the gender identity of the women included. Historical representation leads us to believe only cisgender women were included.
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References
Skloot R. The Immortal Life of Henrietta Lacks. New York: Crown Publishers; 2010.
Beskow LM. Lessons from HeLa Cells: The Ethics and Policy of Biospecimens. Annu Rev Genomics Hum Genet. 2016 Aug 31;17:395-417. doi: 10.1146/annurev-genom-083115-022536.
National Public Radio. ‘Henrietta lacks’: a donor’s immortal legacy. Available from: https://www.npr.org/transcripts/123232331 [Accessed 27th January 2021].
Callaway E. Deal done over HeLa cell line. Nature. 2013 Aug 8;500(7461):132-3. doi: 10.1038/500132a.
Doucleff M. National Public Radio. Decades After Henrietta Lacks' Death, Family Gets A Say On Her Cells. Available from: https://www.npr.org/sections/health-shots/2013/08/07/209807857/decades-after-lacks-death-family-gets-a-say-on-her-cells?sc=tw/ [Accessed 28th January 2021].