Henrietta Lacks and Clinical Research Reform

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“Henrietta’s cells have now been living outside her body far longer than they ever lived inside it.” 

   – Rebecca Skloot, 

“The Immortal Life of Henrietta Lacks”

The current battle against COVID-19 worldwide and the culmination of various vaccines have brought up decades-old questions of clinical trial practices, particularly related to specific marginalized communities. Although the ability to gain information has become easier through platforms like Instagram, Twitter, LinkedIn, etc., that have become prominent places to share easy, digestible, and aesthetically-pleasing information, valid mistrust of the medical community has prevailed. Concerns of wrongdoings that range from the Tuskegee Syphilis Study to the story of Henrietta Lacks have significantly been raised by the Black community, a community that continues to face significant health disparities when compared to other racial and/or ethnic groups in COVID-19 deaths and various different health outcomes. 

It would be unjust to discuss the clinical trial and medical practice transparency without mentioning the lessons learned from Henrietta Lacks’ legacy. The 1950s ushered in the Civil Rights Movement in the United States, where Black people protested and pushed against the hegemonic system of racism within the country. Shortly before the Civil Rights Movement, however, a Black woman’s story would be one that transformed the very science of conducting research and clinical trials using human subjects. 

The Story of Henrietta Lacks

On January 29, 1951, Henrietta Lacks, a 30-year-old Black mother and wife fromA picture of henrietta lacks and her husband Virginia, visited Johns Hopkins hospital for vaginal bleeding, feeling a knot inside of her, and a persistent lump on her cervix (“Medical Research: Trust and Henrietta Lacks, Part 1,” 2018; Nott, 2020). During a time of segregation and commonplace racial attacks, Lacks was housed in a segregated birthing ward at Johns Hopkins Hospital in Baltimore, Maryland – one of the very few hospitals that accepted poor African-American people (“Medical Research: Trust and Henrietta Lacks, Part 1,” 2018; Butanis, “The Legacy of Henrietta Lacks,” 2020). Mrs. Lacks suffered severe bleeding after recently giving birth, and upon doing imaging, Dr. Howard Jones, her gynecologist, found a large, malignant tumor on her cervix (“Medical Research: Trust and Henrietta Lacks, Part 1,” 2018; Butanis, “The Legacy of Henrietta Lacks,” 2020). She had cervical cancer. Mrs. Lacks was given radium treatments for her cancer, one of the only options for cancer treatments at this time (Butanis, “The Legacy of Henrietta Lacks,” 2020).

During these cancer treatments, Mrs. Lacks would be unaware that the doctors that were treating her were also taking tissue samples from her cervix without her permission (Butanis, “The Legacy of Henrietta Lacks,” 2020). While fighting for her life, Mrs. Lacks’ biospecimen was being examined by researchers in the name of science.

Henrietta Lacks ended up dying on October 4, 1951, at the age of 31 with the official cause of death labeled as terminal uremia, not ever knowing that her tissue cells would make incredible advancements in science (“Medical Research: Trust and Henrietta Lacks, Part 1,” 2018; Van Hollen, 2019; Nott, 2020). 

Henrietta’s HeLa Cells

It was common practice that samples of cervical cancer tissues were taken from cervical cancer biopsy patients at Johns Hopkins and sent to Dr. George Gey’s lab. Dr. Gey, prominent cancer and virus researcher, would examine the tissues, which would often die (Butanis, “The Legacy of Henrietta Lacks,” 2020). The cells from Mrs. Lacks, however, were different. Unlike every other cervical cancer cell that would quickly die upon being received by the lab or survive for weeks at best, Henrietta’s doubled every 20 to 24 hours (“Medical Research: Trust and Henrietta Lacks, Part 1,” 2018; Butanis, “The Legacy of Henrietta Lacks,” 2020). Encaptured by the arguably most important scientific discovery in at least the last century, Henrietta’s cells became the first-ever immortal human cell line (Butanis, “The Legacy of Henrietta Lacks,” 2020).

An immortal cell line is an “atypical cluster of cells that continues to multiply on their own outside the organism from which they came, often due to a mutation” (Nott, 2020).

These cells were extraordinary because they enabled researchers to study human cells outside the human body (Nott, 2020).

Lack’s cells were distributed freely and widely to other laboratories, as the excitement of cells unlike any other became known across the world (Butanis, “The Legacy of Henrietta Lacks,” 2020). 

Accomplishments of the HeLa Cells

These cells, seen as a remarkable anomaly, were dubbed the “HeLa” cells, after the first two letters of Henrietta’s first and last names (Butanis, “The Legacy of Henrietta Lacks,” 2020). Her cells were commercialized and proved to be extremely unique (Van Hollen, 2019). Since their discovery, Mrs.Lacks’ cells have been used for a variety of purposes, such as:

  •  Researching the effects of toxins, drugs, hormones, and viruses on the growth of cancer cells
  •  Radiations
  •  Poisons
  • To study the human genome and AIDS and Parkinson’s disease research
  • Testing zero-gravity effects on humans in outer space 

And even the polio vaccine, without the need to experiment on humans themselves (Johns Hopkins Medicine, 2018; Van Hollen, 2019).

Henrietta Lack's HeLa cells

HeLa Cells and Clinical Research Reform

The HeLa cells were the first cells to be cloned (1955) and have currently been a part of more than 11,000 patents (“Medical Research: Trust and Henrietta Lacks, Part 1,” 2018). HeLa cells were even used in research for vaccines against COVID-19 (Nature, 2020). Because her cells made significant advancements, they led to two receiving Nobel Prizes in research and effective cancer treatments. (Brown, 2018). Ultimately, Henrietta’s cells jumpstarted advances in clinical and medical science research, but how the cells were taken and then profited from created controversy and questions of ethics in biomedical research.

In the 1950s, the protection of humans in research was very minimal. There were things learned from World War II’s atrocities, the Nuremberg Code, the Declaration of Helsinki, the Tuskegee Syphilis Study, and the Belmont Report. Still, many of these wouldn’t be put into effect until long after the HeLa cells were discovered. Patients during the ’50s were test subjects without their knowledge and had no other part in the research process itself, which is why “Henrietta Lack’s name has lived so much longer than she did” (“Medical Research: Trust and Henrietta Lacks, Part 1,” 2018). Henrietta’s story set the blueprint for global health, scientific research, quality of life, and patients’ rights (Van Hollen, 2019).

The controversy of the HeLa cells enacted the following changes to clinical human subject research:

  1. Informed Consent: In the 1950s, informed consent was unheard of in clinical research. It was common practice for tissue donors to be unaware that their tissue was taken, nor were they ever consented. Currently, informed consent is at the forefront of the clinical trial process. Informed consent is a strict document that initiates the process of research, from donations to medical trials. Informed consent and biospecimen sample collections are overseen by an Institutional Review Board (IRB), or a regulatory and legal agency that oversees human subject research for safety, compliance, and thoroughness (Butanis, “The Legacy of Henrietta Lacks,” 2020). The IRB must approve every research study that involves humans, and the research team must submit these documents to the board before the research is carried out. 
  2. Medical Records Privacy: Patients virtually did not have any rights in the medical system. They were not able to see their medical records nor keep them. State and federal laws prohibited research institutions from sharing patient medical information connected to the research. Now, patients have some control over their private information. They see and have copies of their medical records. They also have to consent to the sharing or using their medical records, with the state and federal government overseeing these processes. 
  3. Segregation: During the 1950s, Black people fought for desegregation in America and better quality medical treatment of Black patients. Black patients were in separate wards than white patients and given arguably, the differential treatment that can still be seen until this day. Although segregation hospitals are no longer existing in the United States, Black people still struggle to receive similar care in primary care and the process of clinical trials (Day, 2017).

Henrietta’s Legacy and Family

Although the HeLa cells became popularized and profitable, Henrietta’s family struggled. They did not receive any revenue or information from researchers for more than twenty years (Van Hollen, 2019). Doctors did not notify her family of her cells’ usage for decades, even though her name became public, the media possessed her medical records, and her genome was published online (Nature, 2020). In the late 1970s, Henrietta’s family first became knowledgeable about her immortal cells and their role in the advancement of medicine after being asked to donate blood to see whether the HeLa cell lines had been contaminated (“Medical Research: Trust and Henrietta Lacks, Part 1,” 2018). Her family understandably were horrified after finding this out – they struggled to survive while their family member’s cells made it easier for others to live. On top of that, the HeLa cells’ contributions were so substantial that it was impossible to compute the revenue that the cells conjured. Meanwhile, Lacks’ family members struggled with thousands of dollars of debt and living without basic and quality health insurance. The irony was remarkable. (“Medical Research: Trust and Henrietta Lacks, Part 1,” 2018; 23andMe, 2018). It wasn’t until the 2010 release of “The Immortal Life of Henrietta Lacks” by Rebecca Skloot that Henrietta’s life and legacy became widely known and that the clinical research community owned up to the death of Lacks and their misuse of her privacy and body through providing monetary and scholarly ways to honor her (“Medical Research: Trust and Henrietta Lacks, Part 1,” 2018).

To show an image of henrietta

Henrietta’s Life

Besides the financial aspect attached to Henrietta’s legacy, there was so much that her family did not know about her life story. In the seventies, Henrietta’s daughter, Deborah, tried to gain more information about her mother’s condition and death and was given a medical school genetics book by scientists and told, “Here, read this.” They did not consider the years of segregation, lack of medical knowledge, and unequal educational opportunities for African Americans such as Deborah (White, 2018). Mistrust of research was also rooted in the research community’s uninterest in bridging this medical knowledge gap and bringing the Lacks family in on their matriarch’s legacy White, 2018). Jeri Lacks-Whye, Henrietta’s granddaughter, said in an interview,

“Everything we know about our grandmother came from the book. We have a better sense of wh

o she was as a person, as a mom, as a wife. They say she loved to wear red nail polish, that she never left the house without a neatly pleated skirt, loved to cook, had hazel eyes, a small waist, size six shoes. It’s a great honor to know our grandmother as a person rather than just as HeLa cells” (White, 2018).

Many people did not know that she was a cook, with spaghetti being her go-to dish. Or that she was a dancer, often gliding with one of her five children in her arms. And lastly, that her doorway was filled with family and others in need as she was the emotional and psychological center for so many members of her community (Nature, 2020). Henrietta’s life was so much more than her cells. She was a life that deserved more care, respect, humility, and love.

To show diversity in clinical research participants

Necessary Reflections for Clinical Researchers

When asked the following question by a medical student at a Stanford University talk, “What can future scientists and physicians do to address the bioethical issues surrounding scientific progress?” Lacks’ grandson, Alfred Carter Jr., answered,

“Just keep in mind that these are human beings that you are dealing with. Try to talk to them in a way that they can understand. Just know that they’re human” (White, 2018).

Clinical research has had a tainted and atrocious history in how human subjects have been treated, and with specific communities, the trust continues to be broken. Henrietta Lacks’ story is praised as an accomplishment in medicine without acknowledging the consequences that she and her family faced as a result. Although her death ensured protections to patients, policy changes in conducting clinical trials, increased conductions of ethical research, and more, her family’s legacy and struggles call for the need to build patient trust, especially in marginalized communities (Van Hollen, 2019).

Henrietta should’ve been seen as more than

 what her body could do for others, but as the human she was. As the life that she led. As the mother, the community healer, a person with lifetimes and stories that were lost after her diagnosis.

Because of Henrietta’s story and others, clinical researchers must gain the trust of patients and provide them with essential information to determine whether or not they should participate based on the information presented and the risks/side effects made upfront (“Medical Research: Trust and Henrietta Lacks, Part 1,” 2018). The clinical team must also ensure people where their data will end up or be used for. They must provide patient protection at every single level and make possible issues transparent (23andMe, 2018). 

Power of Patients is committed to empowering patients to take hold of their recovery and their choices with what they’d like to do with their bodies. Our mission is to help patients make discoveries in their conditions by tracking their symptoms and triggers on our Dashboard to share with their practitioners and educate patients considering clinical trials. We believe in choice. Your choice. Get started with us today at powerofpatients.com to start tracking your symptoms and learn more about brain injuries and clinical trials.

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