The story of Henrietta Lacks and the HeLa cells is of both great scientific and historical importance. A 2010 novel and a 2017 film starring Oprah Winfrey both tell the story of Henrietta Lacks from the perspective of writer Rebecca Skloot.
Lacks was an African American woman, born in Virginia in 1920. After losing her mother at a young age, Henrietta went to live with her grandfather on a tobacco farm. They lived in a house that had formerly served as the family’s slave quarters. Henrietta had her first child at the age of 14, and would eventually become a mother of five. The Lacks family later relocated to Maryland from Virginia, in search of a better life.
Unfortunately, Henrietta was diagnosed with cervical cancer at the age of 30 and died within a year of her diagnosis. During her treatment at Johns Hopkins Hospital, doctors took two cervical samples without her consent. To protect her identity, the samples were logged under the pseudonym Helen Lane and abbreviated as “HeLa” cells. HeLa cells are remarkable because they continuously divide, allowing them to be used indefinitely in laboratory settings.
Prior to the discovery of these cells, regular cells typically lasted just a few days in a lab. The HeLa cells' ability to multiply offered scientists more time for their research. HeLa cells also allowed for experiments to have more reliability because of the novel ability to run tests on the same cells at different times and in different places.
HeLa cells became well known for their use in the research that led to the eradication of polio. After their use in the polio vaccine, HeLa cells started to be widely sought after by researchers. They were eventually sent around the world in mass quantities. The immortal cell line has been used for medical and commercial research, generating billions of dollars. The discovery of the cells and their ensuing usage revolutionized science.
HeLa cells were tested to learn the effects of zero gravity on the human body. They have also been used in many cases to test human sensitivity to various substances. Both Ebola and HIV treatments can accredit their development to HeLa cells. There are thousands of patents involving the various utilizations of this immortal cell line. As fruitful as the cells have been, they are also known to be troublesome. HeLa cells have a tendency to produce so rapidly, they contaminate other cell cultures. It is estimated that up to 20 percent of all cell cultures contain HeLa cells.
HeLa Cell Line Controversy
Not only are unique characteristics of HeLa cells incredible, but so are the ethical developments that arose from their usage over time. Henrietta Lacks was a granddaughter of American slavery. She was born a descendent of both the master and the slaves of the former plantation that she grew up on. She grew up a woman of modest means, and her descendants today mostly are working and middle-class people. This information makes her contribution, albeit non-consensual, to science remarkable. It also raises several questions about the ethics of the harvesting of her cells and the profit from their distribution. At the time of her illness, informed consent was not legally enacted, so no laws were broken.
Despite the billions of dollars earned as a result of aggressive cancer that ended her life, none of the profit earned by companies using HeLa cells has been given to her family. Also, their genome was mapped and made easily available for public use. Only recently did the National Institute of Health negotiate with the family to make their genetic information exclusively available to researchers. Given the history of the United States and the abuses of African Americans in the country’s scientific legacy, HeLa cells are a sensitive issue despite the lack of protective practices at the time they were harvested.
The sensitivity of race and research in the United States makes the life of Henrietta Lacks a testament to the need for the development of bioethics. There are several reasons why the use of this woman’s cells provokes discussion regarding ethics in science. The primary ethical issue in regards to this case is the fact that the cells were harvested without consent. This means that every entailing sale and experiment has also occurred without consent.
Informed consent is a concept that was developed well after Henrietta Lacks passed away. It is a legally binding practice in science and medicine that requires the subject of research to be informed at their level of understanding regarding any research activities concerning their person before giving their explicit consent to the proposed activities. The sale of HeLa cells also breaches unclear ethical territory. As mentioned previously, the Lacks family has not had a share in the profit garnered from the cells nor were they properly compensated for the book and film written about her life.
The lack of consent or family compensation is said, by some, to be reflective of racial inequality due to the power dynamics between researchers and her family. Over time, the field of bioethics has led to policies that clearly delineate the rights of patients and medical field professionals. However, these policies have done little to satisfy questions regarding HeLa cells due to the fact that the case predates the policies.
Remembering Henrietta Lacks
Despite the legal limitations involved in finding justice for Henrietta and her family, many institutions took interest in her story and have made significant steps in honoring her memory. Johns Hopkins Hospital hosts an annual symposium in her name, in addition to offering science and medical school scholarships. The city of Baltimore named a park after Henrietta Lacks. Her portrait has also graced both the National Portrait Museum and the National Museum of African American Culture and History. In 2017 Oprah starred as Lacks in the biopic based on the book written by Rebecca Sloot in 2010.
Henrietta Lacks and her descendants may not have received compensation for her immeasurable contribution to science, but her legacy is here to stay. In addition to her role in providing the world with treatments for diseases such as HIV, Ebola, and Polio, Henrietta Lacks taught the scientific community important lessons about privacy, consent, and restorative justice.