December 10, 2023
December 10, 2023

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The Ethics of Henrietta Lacks

When I was a medical student, I worked for two years in a laboratory doing research in cell culture. Naturally the main cell line I worked with was the HeLa cell line. This is an immortalized cell line that has become very widely used throughout scientific research for all sorts of purposes. Indeed, it was used by Jonas Salk for the incubation of poliovirus for the production of the polio vaccine, among other uses.

Henrietta Lacks was a 31-year-old African American woman with five children who developed advanced cervical cancer in January of 1951. It should be borne in mind that at that time, prior to the Pap smear, this was the most common cause of female cancer mortality. She went for treatment for intermittent vaginal bleeding to Johns Hopkins Hospital where she underwent a cervical biopsy as per clinical routine in order to establish the diagnosis. Dr. George Gey, the director of the Tissue Culture Laboratory at Hopkins, took some of the resected tissue specimens for use in his efforts to establish a permanent cell line, which did not exist at that time. When cells were placed into culture, they would reproduce and proliferate for a certain number of mitoses (cell divisions) but then stop growing. There was a perceived need for a permanent tissue culture line. And Dr. Gey was taking samples from surgical specimens and making efforts to try to isolate immortal cell lines from them. Lacks was treated with radiation therapy, the standard treatment for cervical cancer at the time, but her tumor metastasized widely and she ultimately died before the end of 1951.

At that time, no informed consent for use of her cells was obtained from Lacks or her family, but it was not normally required or sought at that time. Indeed, discarded tissue from surgical procedures was considered free for use and not requiring consent. For some reason, the cells from Lacks’ cervical cancer grew rapidly and continuously and became immortal, i.e., they appear to be able to reproduce forever without a limit. As a result, they were later distributed to other scientists to be used in scientific experimentation. They were never patented but they were used for commercial purposes, e.g., in the pharmaceutical industry in the preparation of drugs, and thus led to the generation of large sums of royalties for Dr. Gey and Hopkins.

The use of Henrietta Lacks’ cells without her consent became a subject of great controversy and ethical argumentation, although not until several decades later, and has several dimensions. In 1951, Johns Hopkins was the only hospital in Baltimore where African Americans could receive free cancer care, as she received. As above, these patients frequently served as research subjects with limited consent procedures.

The family of Lacks did not receive any of the funds that derived from the use or sale of her cell line. In fact, they were themselves poverty stricken and had limited access to healthcare. A subsequent California Supreme Court ruling in 2010 decided that discarded tissue or cells taken and then commercialized could be done without any rights by the patient or his/her family.

In 1981, the federal Common Rule was promulgated to govern human subjects research. This basically demands that informed consent be obtained if samples are to be taken for research purposes or if identifying information regarding the patient is to be disclosed. The fact that the cell line is identified by Henrietta Lacks’ initials would have demanded that informed consent be obtained. And, of course, much of her clinical history is widely known. Under these rules, informed consent would be mandatory.

In 2021, Lacks’ family sued various companies that have made extensive use of HeLa cells in order to obtain some level of compensation. To my knowledge, these lawsuits are currently ongoing. A book by Rebecca Skloot, “The Immortal Life of Henrietta Lacks,” was published in 2010, followed by a movie based on it, which reviewed the history of this cell line and how her family dealt with it. The tenor of the book was that the family was unfairly dealt with and that racism played a major part in this. There have been multiple attempts to honor Lacks in recent years. In 2018, Paul Rothman, the dean of Hopkins (an old friend) announced that Hopkins would be naming a new building in honor of Lacks, and Oprah Winfrey has established some philanthropic projects in her name.

Alfred I. Neugut, MD, PhD, is a medical oncologist and cancer epidemiologist at Columbia University Irving Medical Center/New York Presbyterian and Mailman School of Public Health in New York. Email: [email protected].

This article is for educational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment, and does not constitute medical or other professional advice. Always seek the advice of your qualified health provider with any questions you may have regarding a medical condition or treatment.

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