Patient Cell Lines
By Caroline Santoro
Henrietta Lacks was thirty years old when she was diagnosed with aggressive cervical cancer in 1951 (Beskow, 2016). As was the case with many other patients at that time, tissue samples taken during her stay at Johns Hopkins Hospital were distributed to researchers without her knowledge or approval. What researchers found was astounding — unlike typical cells that could divide only a limited number of times, her cells could survive and divide in a culture forever. Although Henrietta died within the year, her cells, known as HeLa cells, are still used today in laboratories and classrooms around the world, including in Honors Bio 2 here at Pingry. HeLa cells epitomize the bioethical controversy of patient cell lines. Although scientists initially shared HeLa cells for the advancement of science with anyone who asked, they have since profited from the sales of the cells without ever sharing those profits with Henrietta Lacks’s financially struggling family. This story highlights the need for policies to prevent the exploitation of patients like Lacks.
HeLa cells have played a major part in some of science’s most important research. Rebecca Skloot, author of The Immortal Life of Henrietta Lacks, explains in an interview, “They were used to develop the polio vaccine. They went up in the first space missions to see what would happen to human cells in zero gravity. Henrietta’s cells were the first human cells ever cloned, some of the first genes ever mapped. They’ve been used to create some of our most important cancer medications [and] were essential for developing the HPV vaccine” (Goho, 2013). The continued use of these cells raises important bioethical questions: Is it acceptable to use these cells for scientific research when the person from whom they came never gave her consent? If it is justifiable to use them without consent for scientific research, is it ethical to commercialize them without compensating the donor or the donor’s family? In the case of Pingry’s use of the HeLa cells, should the school “do the right thing” by compensating the Lacks family through the Henrietta Lacks Foundation, which was started by Skloot to provide the family with education and health care grants, even if they are not in any way required to by law?
Laws regarding biospecimens now assign greater rights to patients, but they still do not require patient consent for the scientific and commercial use of biospecimens. In America, the Common Rule was developed to protect people from risky experimental research (Beskow, 2016). More specifically, if a scientist takes biospecimens for specific research and the donor’s name is attached, the donor must give consent. However, if cells were collected for some other purpose, such as a routine biopsy, and the name of the donor is detached, no consent is required. Another way researchers avoid consent is by not recording any identifying information, in which case no consent is required (Beskow, 2016). Following World War II, the international community developed the Nuremberg Code in response to the Nuremberg trials and the heinous experiments done on Jewish people by Nazi doctors. The Code’s first line states that “The voluntary consent of the human subject is absolutely essential” (OHRP, 2016). However, since it is a code of research ethics and not a law, the Nuremberg Code cannot be legally enforced. With these loopholes, the questions of equity introduced by Henrietta Lacks’s story have not yet been solved — if she were a patient in the United States today, researchers could have used these loopholes to commercialize her cells without her consent.
Human tissue has been and will always be an important part of scientific research. However, when patients’ cells are sold online across the world for immense profits, the cells are no longer simply advancing science; they have become a commodity whose rightful owners are entitled to a share of whatever financial benefits they generate. Laws regarding biospecimens have a long way to go before they fully protect the rights of patients. Until they do, the use of patients’ cells for profit without consent creates a feeling of mistrust and exploitation in a field whose primary objective should be to improve lives, rather than make money.
- Beskow, L. M. (2016, August 31). Lessons from HeLa Cells: The Ethics and Policy of Biospecimens. Retrieved December 24, 2017, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5072843/
- McHenry, E., & University of Minnesota. (2014, December 04). Origin of HeLa cells continues to impact research ethics. Retrieved December 24, 2017, from https://www.healthtalk.umn.edu/2014/11/11/origin-of-hela-cells-continues-to-impactresearch-ethics/
- Goho, A. (2013, May 15). The Legacy of Henrietta Lacks. Retrieved December 27, 2017, from http://www.cancertodaymag.org/Spring2013/Pages/Rebecca-Skloot- Henrietta-Lacks-HeLa-informed-consent.aspx
- Office for Human Research Protections (OHRP). (2016, February 19). Ethical Codes & Research Standards. Retrieved December 28, 2017, from https://www.hhs.gov/ohrp/international/ethical-codes-and-research-standards/index.html
- Skloot, R. (2010). The immortal life of Henrietta Lacks. New York: Broadway Books.