Lawsuit Filed by Henrietta Lacks’ Estate Against Ultragenyx

Henrietta Lacks’s estate filed a lawsuit against the biopharmaceutical company Ultragenyx for a share of the profits of their products derived from HeLa cell tissues. The lawsuit was filed on August 10 in the US District Court for the District of Maryland. They argue that the pharmaceutical company has massively profited from its gene therapies, which were developed using HeLa cells.

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The plaintiff in the suit is Ron L. Lacks, Lacks’s grandson and the representative of her estate. These legal proceedings come after the settlement of a previous lawsuit against Thermo Fisher. This earlier lawsuit was filed in 2021 and was just settled earlier this month. However, the terms of their agreement weren’t disclosed. Now Henrietta Lacks’s family is suing Ultragenyx for a similar reason. They are seeking financial compensation for the profits that were generated from therapies developed with HeLa cell tissues. Ultragenyx’s focus is the development of therapies for rare genetic diseases through the use of adeno-associated virus vectors (AAV). These AAV vectors are mass-produced using the HeLa cell line. 

Ethical Concerns and Historical Injustices 

This lawsuit raises concerns over the gain of profits by Ultragenyx without compensation toward Henrietta’s estate. But more importantly, it raises ethical concerns that stem from the collection of these cells without consent and lack of recognition. Lacks was a 31-year-old African American patient with cervical cancer at Johns Hopkins Hospital in 1951, where samples of her cancerous cells were taken and then given to researchers without her consent. Since then, the self-replicating cells have become invaluable. They have contributed to many discoveries in different fields, including in vitro fertilization, the development of polio vaccines, HPV vaccines, and most recently, COVID-19 research. 

This case perfectly showcases the dehumanization of individuals in the pursuit of medical advancements. Moreover, it underlines the racial inequality in the system at the time. While the cell line and the discoveries it contributed to were highly lucrative, the Lack family did not see any profits throughout the years. Individuals have a right to control their bodies and what is done with them. This includes whether biological materials may be used for research or other purposes. The matter of consent stands as a paramount one; the lack of it amounts to exploitation and infringes on a person’s autonomy. 

Ultimately, the issue isn’t just one of fair compensation but also an acknowledgement of wrongdoing. The settlement of the first lawsuit and the filing of a new one are steps forward in acknowledging and righting the wrongs done in the past. The important thing is to acknowledge the contribution and role played by the donors of biological specimens in research and advocate for better consent regulations.

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GeneOnline Team