Ethics, Informed Consent and Race as Discussed in “The Immortal Life of Henrietta Lacks” by Rebecca Skloot

**Warning: this commentary contains spoilers.**

I had first heard about the HeLa cell line from my high school biology class. These cancerous cells came from a woman named Henrietta Lacks, when she had treatment for her cervical cancer in 1951 at the John Hopkins Hospital in Baltimore, Maryland. These cells were grown in tissue culture, distributed around the world, and became a multimillion-dollar industry. During my class, I had learned that these cells could grow in suspension, whereas normal cells need to adhere to something before they can grow. As well, I learned that these cells did not exhibit “contact inhibition”, a trait where cells only grow if they have enough free space to do so, and would stop growing once having reached an edge and would only grow in one layer. However, the HeLa cells did not stop growing when edges were reached, and would create multiple layers.

Henrietta Lacks

Henrietta Lacks

Around the same time that I would learn these concepts in high school, the story behind this famous HeLa cell line would have been uncovered and published. In her book, Rebecca Skloot describes the life of Henrietta Lacks, her children, and the importance of the HeLa cells. She also includes the multitude of research that has been done using HeLa cells, ranging from the development of the polio vaccine to being brought to outer space. Additionally, she describes how these cells influenced ethics in research and the evolution of informed consent. Informed consent is described as the permission given with the knowledge of benefits and consequences, and is used in healthcare or research settings.

While discussing the issue of ethics, Skloot references examples of research done on vulnerable persons and minorities. Some examples that were referenced are the gruesome surgeries performed by Nazi doctors on Jews, a study in which cancer cells were injected into prison inmates, and the Tuskegee Syphilis study; a study in which African American men were denied any treatment for their syphilis so the full course of the disease could be monitored. The issues with many of these studies were that the researchers either did not inform the subject at all, only told partial information, or told the information in an incomprehensible manner.

When discussing ethics and informed consent in this book, the topic of racism is also covered. Henrietta Lacks was an African American woman, living at a time when segregation was prominent. At the John Hopkins Hospital, where Henrietta received all of her cancer treatments, there were separate operating rooms for white and black people. Additionally, every time that Henrietta had her blood taken, the nurses would label it as “colored”. There were also rumors circulating at the time that the John Hopkins Hospital “snatched” African American people off the street to perform research on them. These rumors became very real to the Lacks’ family when they discovered twenty years after their mother’s death that Henrietta’s cells were being used by many researchers around the world. It has been claimed that Henrietta gave consent to the free use of her cells, however the only records available are of a form for her operation, which did not include any information about research. Another case involving lack of informed consent with the Lacks family involved Henrietta’s oldest daughter, Elsie who was institutionalized at the Crownsville State Hospital for epilepsy. During this time, Elsie was speculated to have been included in the pneumoencephalography studies done on epileptics at this hospital, a process in which X-ray pictures of brains are taken by drilling holes into the skull and draining the cerebrospinal fluid. These studies had horrible side effects, such as dizziness and seizures. If these studies were done on Elsie, the researchers did not get the required permission from the Lacks family, and would have not been unable to give informed consent to Elsie since she was diagnosed as “dumb” at an early age.

Lucile

Lucile “Elsie” Lacks, five years before she was institutionalized at Crownsville State Hospital

Finally, Skloot also explains the evolution of ethics in research throughout the book. She mentions the Nuremberg Code (1949) and Declaration of Helsinki (1964), which were ethical codes that resulted from the Nazi experiments on Jews and other prisoners. Another example mentioned was a case with Chester Southam, who had performed experiments on patients at the Jewish Chronic Disease Hospital in Brooklyn. He injected his patients with cancerous HeLa cells, and was sued in 1963 by a lawyer named William Hyman. His research was deemed unethical because he had never disclosed to the patients what he was injecting into them. From this, many more lawsuits arose regarding ethics and informed consent in research. In 1996, the Health Insurance Portability and Accountability Act (HIPAA) was created, which protected the privacy of patients. Many of these acts and codes are not legally binding, and they remain a challenge when implementing them into a court of law. There has undeniably been a major change in the past century regarding ethics in research, the development of informed consent, and patients’ rights. I can only hope as we move forward that these aspects improve for future researchers and patients.

Chester Southam

Chester Southam

References:

Boudnock, G. (2011). Justifying evil; Chester Southam [Photograph]. Retrieved January 9, 2015, from http://froggy213.hubpages.com/hub/Justifying-Evil-Chester-Southam

Find a Grave. (2010). Lucile Elisie Lacks [Photograph]. Retrieved January 9, 2015 from http://www.findagrave.com/cgi-bin/fg.cgi?page=gr&GRid=57275518

Martinez, R. (2013). Ethics of informed consent and the legacy of Henrietta Lacks [Photograph]. Retrieved January 9, 2015 from http://rabinmartin.com/insight/ethics-of-informed-consent-and-the-legacy-of-henrietta-lacks/

Skloot, R. (2010). The immortal life of Henrietta Lacks. New York: Random House.