In 1951, Henrietta Lacks, a young African American woman, went to Johns Hopkins hospital complaining of vaginal bleeding. She was diagnosed with an extremely aggressive tumor on her cervix, and she immediately started treatment for her cervical cancer. Then, the treatment involved putting glass vials of radium, a radioactive metal, into fabric pouches and stitching them to the site of the tumor while the patient was under anesthesia.

During treatments, a surgeon collected Lacks’ cells without her knowledge.

“When (Lacks’) cells were taken without her knowledge, there were no laws about that,” said Cami Lind, senior Institutional Review Board coordinator for the Social Behavioral and Education Research Panel.

Since the adoption of the Common Rule, more formally known as the Federal Policy for the Protection of Human Subjects, in 1991, when human subjects or their biospecimens are used in research studies, it is required that informed consent be obtained. This means the participants must be fully informed on the purpose and risks of the study, give their consent to participate and still receive the option to withdraw from the study at any time without consequence.

Lacks’ cells, which were collected from the tumor causing her cervical cancer, turned out to be groundbreaking. Referred to as HeLa cells for the first two letters of Lacks’ first and last names, they were the first human cell line able to survive and replicate outside of the human body.

“I used HeLa cells. So many of us have used HeLa cells.” -Nicole Kelp, department of microbiology, immunology and pathology assistant professor

The antiquated treatment for cancer in 1951 was very painful. Lacks died two months after her initial diagnosis.

Although Lacks died, her cells lived on in revolutionary research across scientific disciplines. Her cells were used to create vaccines for polio and COVID-19, and they played a key role in the worldwide study of AIDS, leukemia and cancer.

“I used HeLa cells,” said Nicole Kelp, a professor in the department of microbiology, immunology and pathology at Colorado State University. “So many of us have used HeLa cells.”

Though the scientific community used Lacks’ cells for decades, her family was still unaware of the fact that her cells had been collected at all. While the discoveries made using the HeLa cell line proved to be lucrative, Lacks’ family never saw any compensation. It was not until the 1970s — 20 years after her cells were obtained — that Lacks’ family found out about the collection.

In 2010, the publication of the novel “The Immortal Life of Henrietta Lacks,” written by CSU alum Rebecca Skloot, gained widespread attention for the story of HeLa cells and, with it, the concept of informed consent in scientific procedures. 

“You should choose what your cells are used to do,” Kelp said. “(Lacks) wasn’t given that choice. That’s the issue.”

To prevent situations like that of Lacks and her family from happening again, the scientific community has taken crucial steps to protect individuals who participate in studies. One of the biggest steps was the creation of the Institutional Review Board.

“The Institutional Review Board is responsible for making sure we’re upholding ethical principles and federal regulations that pertain to research,” Lind said.

CSU is a Research I institution and has its own IRB with a vital role on campus.

“All human subject research should be reviewed and approved by the (IRB),” Kelp said.

Lacks was not the only person who was not given the right to informed consent throughout the years. Now the Henrietta Lacks Foundation aims to help people and their families who have faced similar situations, such as those involved with the Human Radiation Experiments or the U.S. Public Health Service Untreated Syphilis Study at Tuskegee. 

“These (IRB) regulations are now in place because of things like the Henrietta Lacks case,” Lind said. 

While Lacks was not given the choice of informed consent, she certainly helped improve human research. Without her story, we may not have the Common Rule, the IRB or numerous other protections for participants in research. HeLa cells continue to live on, and now so does Lacks’ legacy.

Reach Hana Pavelko at science@collegian.com or on Twitter @hanasolo13.