The Henrietta Lacks Estate vs Thermo Fisher: An update on the conversation surrounding the origin of HeLa cells

Written by: Christina Del Greco

Edited by: Ryan Schildcrout, Henry Ertl, and Madeline Barron 

Illustrated by: Katie Bonefas 

On October 4, 2021, Henrietta Lacks’ estate filed a lawsuit against Thermo Fisher Scientific, accusing them of selling products containing Henrietta Lacks’ cells (HeLa cells) for profit, despite the fact that the cells were taken without her consent. Nor, they say, has Thermo Fisher asked for the family’s consent even after the origin of HeLa cells became controversial. HeLa cells can sell for over $2000/mL, contributing significantly to Thermo Fisher’s annual revenue of over $35 billion per year. This lawsuit represents many of the ethical issues that have repeatedly arisen regarding the origin of HeLa cells. As such, to understand the lawsuit, we have to understand the history and significance of the cells themselves.

HeLa cells were not developed in a lab. They came from Henrietta Lacks, a woman who was being treated for cervical cancer at The Johns Hopkins Hospital in 1951. Her doctor, Dr. George Gey, routinely collected cell samples from his patients. However, unlike the other cells he collected, Henrietta’s cells continued growing rapidly for days on end. Dr. Gey named them HeLa cells for Henrietta Lacks, and, because of the scientific marvel they posed, shared them with other researchers.  

HeLa cells’ ability to grow unendingly were, and are, a major asset for scientists.  Most human cells can only divide a limited number of times because they are senescent, which means that cellular function will deteriorate before cells cease to divide altogether. Organisms use senescence as a protective measure—cells self-destruct before they can acquire potentially harmful mutations.  As a result, propagating cell lines for future experiments, and teasing experimental observations apart from senescence-induced cellular degradation, is challenging. HeLa cells are remarkable because they are considered the first “immortalized” cell line—they can divide indefinitely without becoming senescent. This makes them useful in research because they can be cultured an unlimited number of times, which was completely unique for a human cell line at the time they were collected.

HeLa cells are the most widely used cell line to date (used in over 116,000 studies), and have contributed to the development of the polio vaccine, in vitro fertilization, the COVID-19 vaccines, and more. And yet, Henrietta Lacks’ family never knew they existed until 1973, when they were contacted by researchers seeking additional samples to better understand the cell line.  

Now, almost 40 years and billions of dollars in profit later, the Lacks family estate is now seeking compensation from biotech companies like Thermo Fisher, claiming that Henrietta Lacks’ cells were taken without consent and that they have a right to the profits from continued use of her cells.

Although it was common practice up through the 1970s, scientists today cannot just take someone’s cells without asking them. In 1981, the U.S. passed the Common Rule, also known as the Federal Policy for the Protection of Human Subjects, which details federal policy regarding research involving human subjects. The Common Rule codifies key principles of ethical research established by the World Medical Association—namely, that voluntary consent is necessary prior to beginning a study, that the benefits of such research should outweigh the costs of an experiment, that vulnerable groups (e.g., Native populations) should be protected, and that research needs to be reviewed by ethics committees before it begins. In practice, the Common Rule established that all proposed research involving human subjects must be approved by an Institutional Review Board prior to the start of the project to ensure it follows these ethical guidelines.

The Common Rule would prevent what happened to Henrietta Lacks from happening today. However, protections conferred by the law are not retroactive. Despite their controversial origins, HeLa cells are still widely used by scientists and companies to perform cutting-edge research, as highlighted by the Thermo Fisher lawsuit.  

Notably, scientists are not only using HeLa cells for research, but they are also profiting off of them. In fact, HeLa cells have contributed to over 17,000 patents. Because of this, the Lacks family is seeking financial compensation from Thermo Fisher, especially as the company continues to leave the Lacks family out of the loop when it comes to their commercial decisions, and refuses to pay the family royalties for profits made off of HeLa cell products.  

While it was commonplace to take cell samples without consent in the 1950s, companies like Thermo Fisher have been profiting off of Henrietta Lacks’ cells without communicating with her family long after this practice became unacceptable. As a result, in this lawsuit at least, the Lacks family might be successful in their pursuit of justice. Moreover, Thermo Fisher could be the first of many of many biotechnology companies that see lawsuits over HeLa cell usage.

Based on more recent developments, there is room for hope that the Lacks family will see some change. While obtaining financial compensation from Johns Hopkins, the university that treated Henrietta Lacks and took her cells in the first place, became challenging since they did not patent HeLa cells and are not making money off of them, the Lacks family is now involved in HeLa cell research in other ways. Though there have been individual hiccups (such as the publication and subsequent removal of the HeLa cell genome from the publicly available European Nucleotide Archive without informing the Lacks family), the Lacks family has come to agreements with the U.S. National Institutes of Health and academic institutions to allow for the use of HeLa cells in research. Specifically, the HeLa genome is still available to researchers by request, and approval is granted by a board that contains a Lacks family member. Additionally, any research that uses HeLa cell genomic data must acknowledge Henrietta Lacks and her family in any corresponding publications.  The scientific community was not prepared to face these sorts of scenarios when Dr. Gey first took that sample of Henrietta Lacks’ cells, but, with time, we have slowly started to address the harms that were done. Perhaps this lawsuit will be the next step in that process.

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Christina Del Greco is a Ph.D. candidate in the Department of Human Genetics where she studies enzymes that charge tRNA with amino acids in the mitochondria. Before arriving at the University of Michigan, she completed her B.S. in Biological Sciences at the University of Notre Dame (sorry but go Irish!). Christina is most interested in the intersections between biomedical science and policy, and how improved science communication can bring scientists and policymakers together more effectively. Outside of the lab, Christina is most likely reading science fiction, watching reruns of Castle, or teaching herself how to properly lift weights. She can be found on Twitter and LinkedIn.