Henrietta Lacks
Henrietta Lacks was an African American woman born on August 1, 1920, in Roanoke, Virginia, who became a significant figure in medical research after her death from cervical cancer at the age of 31. Without her knowledge or consent, doctors at Johns Hopkins Hospital extracted cells from her tumor in 1951, which became known as HeLa cells. These cells were remarkable for their ability to survive and multiply indefinitely, leading to their widespread use in numerous scientific advancements, including research on cancer, viruses, and even space travel. Despite the profound impact of HeLa cells on medicine, Lacks's family received no financial compensation for their use, which highlighted issues of informed consent and ethics in medical research.
The legacy of Henrietta Lacks has led to ongoing discussions about patient rights and the exploitation of marginalized communities in scientific research. In 2013, agreements were reached to give her family some control over the use of genetic data linked to HeLa cells, reflecting a shift towards greater ethical standards. Lacks's story, popularized in the book "The Immortal Life of Henrietta Lacks" by Rebecca Skloot, continues to inspire initiatives aimed at improving healthcare access and representation in research for underrepresented communities. Her life and contributions remain a poignant reminder of both the advancements in science and the importance of ethical practices in medicine.
Henrietta Lacks
American medical patient
- Born: August 1, 1920
- Place of Birth: Roanoke, Virginia
- Died: October 4, 1951
- Place of Death: Baltimore, Maryland
Significance: Henrietta Lacks was a mother of five when she died of cervical cancer. Without her consent or her family's knowledge, cells were removed from her body. The cells continued to live and multiply and later became known as HeLa cells. These cells were used in tens of thousands of medical advancements and scientific breakthroughs.
Background
Henrietta Lacks was born Loretta Pleasant on August 1, 1920, in Roanoke, Virginia, a daughter of Johnny and Eliza Lacks Pleasant and the ninth of ten children. Eliza Pleasant died following the birth of her tenth child in 1924. Following his wife's death, Johnny Pleasant moved the family to Clover, Virginia, where the children were divided among relatives. Henrietta Lacks went to live with her grandfather, Tommy Lacks, who eventually raised her along with another grandchild, David "Day" Lacks, at the tobacco farm where their ancestors had been enslaved. The children helped their grandfather tend and sell tobacco in town or in neighboring South Boston, Virginia. Despite being cousins, Henrietta and David began a romantic relationship and eventually married.
In 1942, Henrietta and David Lacks moved to Turner Station, Maryland, where steel factories were meeting the high demand created by World War II (1939–45). Black American families were exiting the South for manufacturing jobs as part of the Great Migration, and David Lacks got a job at Bethlehem Steel.
After finding a hard lump on her cervix and bleeding outside of her menstrual cycle, Lacks visited Johns Hopkins Hospital in Baltimore, Maryland. A sample was taken of the growth, and doctors found it to be cancerous.
Life's Work
When Lacks was diagnosed with cervical cancer in 1951, treatment studies were underway and public wards were used for research, including Johns Hopkins, often without the patient's knowledge. During Lacks's first radium treatments in February 1951, Dr. Lawrence Wharton Jr. collected samples of her tumor and healthy cervical tissue while Lacks was unconscious. Without Lacks's consent, Wharton transferred the samples to Dr. George Gey. A pathologist, Gey was researching ways to grow human cells outside the body, but past research showed that the extracted cells would quickly die. This was not the case with Lacks's cells. Two days after extraction, Lacks's cancer cells placed in culture were growing, and twenty-four hours later, they doubled in quantity. Lacks's healthy cells that were collected died days later, but the cancer cells were described as "immortal." The cells became known as HeLa cells, using the first two letters of Lacks's first and last names as per the lab's naming system. Gey shipped HeLa cell samples to other researchers for free throughout the world, and scientists applied them to experiments ranging from cancer treatments to cures for infectious diseases.
In June 1951, Lacks's health declined, and on August 8, she was admitted to Johns Hopkins. On October 4, 1951, nearly two months after aggressive tumors had taken over her body, Lacks died. More tissue samples were removed, although the Lacks family had only granted permission for a partial autopsy.
By 1952, growing HeLa cells and performing research on them became a lucrative opportunity, as there was a national push on finding a polio vaccine. HeLa cells were used in several medical developments—including viruses, cloning, and DNA structure—and more companies were capable of producing the cells.
As research with HeLa cells continued, Lacks's identity as the woman behind them was known to a limited number of people. In December 1971, an article memorializing Gey after his November 8, 1970, death revealed Lacks's name and how the cells were obtained. In 1973, Lacks's surviving husband and children learned about the cells, and family members had blood drawn to study their cell lines, with the study detailing their genetic history published in 1976. As researchers and biomedical companies made millions of dollars based on the discoveries made with HeLa cells, the Lacks family did not receive any financial compensation.
Impact
By August 2013, HeLa cells had been used in approximately seventy-four thousand cancer studies. They were also sent into space to study the impact of space travel and gravity on humans and were used in HIV/AIDS and in-vitro fertilization research. Lacks's case and the 2010 book about her cells, titled The Immortal Life of Henrietta Lacks, by Rebecca Skloot, raised questions about informed consent and patient privacy. The book showed how research-based hospitals such as Johns Hopkins obtained patient tissue samples without permission in the 1950s, when obtaining consent was not a standard practice. In 2011, the US Department of Health and Human Services sought public comment on proposed rules aimed to protect patient information when their genetic material is used in research.
In March 2013, a team of German scientists released the full HeLa genome, without the family's consent, and logged it into a public database. The genome could disclose medical information about Lacks's descendants. It was removed a few days later. The Lacks family and the US National Institutes of Health (NIH) reached an agreement in August 2013 on the use of the sequence data. The genome was placed in a restricted database that would require NIH-funded researchers to seek permission from the NIH and a panel featuring two of Lacks's family members to use the data. It was the first time the family had some control over the use of HeLa cells.
The Urban Health Institute of Johns Hopkins University awards the Henrietta Lacks Memorial Award to organizations in the Baltimore area that work with the institution to improve the health and well-being of community residents. In 2013, the Henrietta Lacks Health and Bioscience High School in Vancouver, Washington, opened its doors, and its first class of fifty-five graduates debuted in 2016. The high school offers programs in nursing and pharmacy and medical internships in the community. After Johns Hopkins revealed in 2018 that an additional campus research building scheduled for construction would bear Lacks's name, Congress passed the Henrietta Lacks Enhancing Cancer Research Act, aimed at increasing underrepresented communities' participation in cancer research trials, in late 2020.
At a press conference that took place in late July 2021 attended by several of Lacks's family members, it was announced that, through the legal counsel of Ben Crump and Christopher Seeger, the family intended to file lawsuits against several pharmaceutical companies to obtain compensation that they argued was owed to them for the decades of profitable research use of Lacks's cells. By that time, HeLa cells had also been used in researching and developing a vaccine for the novel coronavirus identified in late 2019 that had caused the spread of the COVID-19 pandemic beginning in 2020. After lengthy negotiations, Lacks's family and the biotechnology company Thermo Fisher Scientific, which they argued had profited off the cells for decades after their initial collection, came to a settlement agreement in 2023. At the same time, the family filed additional lawsuits, including against Ultragenyx that same year and against Novartis and Viatris in 2024; despite attempts by Ultragenyx to block the lawsuit from moving forward, in May 2024 a federal judge ruled that the case could continue.
Personal Life
Henrietta Lacks married David Lacks on April 10, 1941. The couple had five children together: Lawrence, Elsie, David "Sonny" Jr., Deborah, and Joe.
The story of Henrietta Lacks's contribution to the first immortal human cell line was portrayed in a 2017 television movie coproduced by Oprah Winfrey. In the film, The Immortal Life of Henrietta Lacks, Winfrey played Deborah Lacks, who is searching for answers regarding her mother's harvested cells.
Bibliography
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Albert, Jessica. "Henrietta Lacks Family Can Proceed with Lawsuit over Use of HeLa Cells after 'Milestone' Federal Court Ruling." CBS News, 21 May 2024, www.cbsnews.com/baltimore/news/federal-judge-allows-henrietta-lacks-family-to-proceed-with-lawsuit-over-unlawful-use-of-hela-cells/. Accessed 26 Aug. 2024.
Epstein, Richard A. "The Uneasy Legacy of Henrietta Lacks." Hoover Institution, 11 Jan. 2016, www.hoover.org/research/uneasy-legacy-henrietta-lacks. Accessed 22 Feb. 2017.
Holpuch, Amanda. "Family of Henrietta Lacks Settles with Biotech Company That Used Her Cells." The New York Times, 1 Aug. 2023, www.nytimes.com/2023/08/01/science/henrietta-lacks-cells-lawsuit-settlement.html. Accessed 18 Oct. 2023.
Hudson, Kathy L., and Francis S. Collins. "Family Matters." Nature, 8 Aug. 2013, www.nature.com/nature/journal/v500/n7461/full/500141a.html. Accessed 22 Feb. 2017.
"The Immortal Life of Henrietta Lacks." HBO, www.hbo.com/movies/the-immortal-life-of-henrietta-lacks/index.html. Accessed 22 Feb. 2017.
Parrish, Susan. "Henrietta Lacks High Launches 55 New Healers." Columbian, 1 June 2016, www.columbian.com/news/2016/jun/01/henrietta-lacks-high-launches-55-new-healers/. Accessed 22 Feb. 2017.
Prudente, Tim. "Family of Henrietta Lacks Hires Star Civil Rights Attorney Ben Crump, Who Says They Plan to Sue Pharmaceutical Companies." The Baltimore Sun, 29 July 2021, www.baltimoresun.com/health/bs-hs-henrietta-lacks-family-compensation-20210730-otwynqdiuzasha2lkvdyxv27ji-story.html. Accessed 1 Sept. 2021.
Skloot, Rebecca. The Immortal Life of Henrietta Lacks. Crown, 2010.
Smith, Stephanie. "Henrietta Lacks' Family Finally Gets Say in Genetic Destiny. Can We Control Our Own?" CNN, 7 Aug. 2013, www.cnn.com/2013/08/07/health/henrietta-lacks-genetic-destiny/. Accessed 22 Feb. 2017.
"A Statement from Johns Hopkins Medicine about HeLa Cells and Their Use." Johns Hopkins Medicine, 1 Feb. 2010, www.hopkinsmedicine.org/news/media/releases/A‗Statement‗From‗Johns‗Hopkins‗Medicine‗About‗HeLa‗Cells‗and‗Their‗Use. Accessed 22 Feb. 2017.
Thompson, Adam. "Henrietta Lacks's Family Suing More Pharmaceutical Companies over Use of Immortal HeLa Cells." CBS News, 7 Aug. 2024, www.cbsnews.com/baltimore/news/henrietta-lackss-family-suing-more-pharmaceutical-companies-over-use-of-immortal-hela-cells/. Accessed 26 Aug. 2024.
"Urban Health Institute Henrietta Lacks Memorial Award." Johns Hopkins Urban Health Institute, urbanhealth.jhu.edu/what-we-do/henrietta-lacks-memorial-award. Accessed 26 Aug. 2024.
Vergano, Dan. "Henrietta Lacks' Family Reaches Privacy Agreement with Scientists." USA Today, 7 Aug. 2013, usatoday30.usatoday.com/LIFE/usaedition/2013-08-08-Henrietta-Lacks-----NIH-forges-historic-privacy-agreement-with-family-of-woman-w‗ST‗U.htm. Accessed 22 Feb. 2017.