Writing, Consent, and Henrietta Lacks

Writing, Consent, and Henrietta Lacks

By The Educator Collaborative Associate Member R. Joseph Rodríguez

“How can it be that no one asked Henrietta Lacks what she wanted or for her own permission?”

—Marbley (pseudonym), student, 12th grade, Austin, Texas

My goal to convince young people about the merit of their words and writings can lead to positive results, although this can vary from moment to moment. Most of the time, however, I succeed. Overall, the trying keeps me going as their language arts teacher. 

Marbley’s question was posed at an opportune time as we read two nonfiction works: The Immortal Life of Henrietta Lacks by Rebecca Skloot and Henrietta Lacks: The Untold Story by Ron Lacks. These two books were significant for learning about the scientific narrative as told by Skloot and the family history perspectives from Ron Lacks, who is also Henrietta Lacks’s grandson. (Books and resources were initially funded through the Envision Equity Grants from the NEA Foundation in Spring 2023.)

Photo courtesy of the author.

Through these two works, my students met the medical heroine named Henrietta Lacks (1920–1951), who is a key figure in the humanities, sciences, and medical research fields. Specifically, students learned how her care, consent, dignity, and health were compromised due to bias, inequality, injustice, and racism (Hernandez, 2023; Kent, 2023). 

For those unaware, Henrietta Lacks, an African American woman, is known for providing the first immortalized human cell line ever grown in culture. This cell line was sourced from her own cancerous cells without consent. These cancer cells were nicknamed HeLa cells (coined from her name) and are used–in order to avoid experimenting on live humans–to study the effects of drugs, hormones, toxins, and viruses on their growth. (Ironically, in Norse mythology and literary studies, Hela is the goddess of the dead (mortals) and queen of the underworld.)

In Spring 2024, my senior students examined diverse viewpoints about who gets to tell Lacks’s story and with whose consent; this included examining the protection and rights of human participants in research studies. As part of the project, students discussed important healthcare issues related to their personhood, consent, dignity, and ethics.

One of these students, Rosa, reminded her classmates and me about her rights as a person: “Nobody’s gonna tell me what to do with my body, and that includes men who’re in office or not.”

I knew that students were concerned about the growing number of cases across the country involving disregard for women’s reproductive rights, the interpretation of consent by convicted athletes, and the denial of medical care throughout the COVID-19 pandemic. 

Some students wondered what HIPAA (the Health Insurance Portability and Accountability Act of 1996) meant, when their patient and health rights were protected as minors, and how to ensure their medical rights as young adults. 

Students applied their questions and demonstrated their learning by designing a Photovoice Project in a civic community using a youth-led participatory action research method that involved the following:

(1) creating a research question,

(2) setting up a research plan,

(3) considering uses of technology and devices,

(4) seeking consent from legal adults,

(5) confirming assent from legal minors,

(6) conducting conversations and interviews,

(7) collecting data and artifacts,

(8) applying coding techniques for themes, and

(9) presenting digital storytelling as research. 

Each of these steps are significant for human participation and the integrity of research studies. Excerpts from the book Photovoice for Social Justice: Visual Representation in Action (2021) by Jean Breny and Shannon McMorrow offered students perspectives about their projects in the beginning phase and helped guide them toward completion and their presentations.

Meeting Henrietta Lacks (HeLa)

In 2016, I read Skloot’s book about Lacks, and I wanted to honor Lacks’s life by introducing her to my students. In the meantime, I wrote the poem “HeLa: Henrietta Lacks” in her honor, which appeared in English Journal in 2017.

The poem served as a mentor text and also complemented our viewing of the HBO film The Immortal Life of Henrietta Lacks (2017) starring Oprah Winfrey. 

At the end of the project, students realized that they knew more about their human and medical rights and what “power of attorney” means in moments of need. Their inferences, wit, and wonder kept me alert and motivated as I worked among these emerging researchers and conferred with them about their writing ideas and inventions. 

Most revealing were their English 4 Notebook entries in response to the following prompt I created:

Their ideas, expressions, and writings* confirm their deeper understanding of the life of Henrietta Lacks and what the words care, consent, and dignity mean for health and well-being in their own lives. (Marbley’s question—from the epigraph—guided our investigations.)

My students’ questions and observations are relevant in a world that changes so quickly and in a society that seems hurried or indifferent to them, especially when it comes to agency, authority, and consent. Before St. Valentine’s Day, students created consent-based messaging in our hallways and to promote more responsible communications.

My students prepared posters to promote consent-language use. Photo courtesy of the author.

Through this project, they gained new views about their personhood and also honored the life of Henrietta Lacks, who continues to accompany us in our health, medical, consenting, and writing lives.

*All student work shared with permission.


References

Breny, J. M., & McMorrow, S. L. (2021). Photovoice for social justice: Visual representation in action. Sage.

Hernandez, J. (2023, Aug. 1). Henrietta Lacks’ descendants reach a settlement over the use of her ‘stolen’ cells. NPR, https://www.npr.org/2023/08/01/1191283359/henrietta-lacks-descendants-settlement-stolen-cells 

Kent, C. (2023, April 18). Henrietta Lacks’ harvested cells: Is the clock ticking on unjust enrichment claim? In Vivo: Pharma Intelligence, https://invivo.citeline.com/IV147698/Henrietta-Lacks-Harvested-Cells-Is-The-Clock-Ticking-On-Unjust-Enrichment-Claim 

Lacks, R. (2020). Henrietta Lacks: The untold story. BookBaby.

Rodríguez, R. J. (2017, Sept.). Henrietta Lacks: HeLa. English Journal, 107(1), 77.

Skloot, R. (2010). The immortal life of Henrietta Lacks. Crown.

Wolfe, G. C. (Director). (2017). The immortal life of Henrietta Lacks [Film]. Your Face Goes Here Entertainment; Harpo Films; Cine Mosaic.

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