In 1951, Henrietta Lacks, a 31-year-old Black woman from Virginia, unknowingly became one of the most important figures in modern medicine.
While undergoing treatment for cervical cancer at Johns Hopkins Hospital, a sample of her cancerous cells was taken without her knowledge or consent. Unlike previous samples that quickly perished, Lacks’ cells, now known as HeLa cells, proved to be “immortal” — capable of reproducing indefinitely in a lab setting.
These cells went on to revolutionize medicine, contributing to groundbreaking advancements such as the polio vaccine, gene mapping, cancer treatments, and even the development of COVID-19 vaccines. However, for decades, neither she nor her family benefited from the billions of dollars generated from HeLa cells.
This legal and ethical dilemma raises critical questions: Who owns biological material taken from patients? What are the legal and moral obligations of medical institutions? And has justice truly been served for Henrietta Lacks and her descendants?
The Legal Landscape: Informed Consent and Patient Rights
When Henrietta Lacks’ cells were taken in 1951, no federal laws required doctors to obtain consent for using a patient’s biological material in research. At the time, it was common practice for hospitals to retain and experiment on patient tissues without informing them.
The concept of “informed consent,” which mandates that patients be fully aware of and agree to medical procedures or research involving their bodies, only gained legal traction in later years.
The landmark 1990 case Moore v. Regents of the University of California established a precedent that individuals do not retain ownership of their cells once they are removed from their bodies. The ruling stated that once tissues are excised, they become the property of the institution that collected them. This decision, though controversial, has influenced numerous cases involving patient rights and medical research ethics.
Despite this precedent, there has been a growing push for increased patient protections, particularly for historically marginalized communities that have been disproportionately affected by unethical medical practices. The case of Henrietta Lacks remains one of the most glaring examples of medical exploitation.
The Lacks Family’s Legal Fight
For decades, Henrietta Lacks’ family was unaware of the widespread use of HeLa cells. It wasn’t until the 1970s that they learned of their mother’s posthumous contribution to science. Despite the global medical breakthroughs facilitated by HeLa cells, the Lacks family never received financial compensation. Instead, they faced decades of financial hardship while pharmaceutical companies profited from HeLa-derived treatments and research.
In 2013, the Lacks family and the National Institutes of Health (NIH) reached an agreement that granted the family some control over the use of HeLa cells in NIH-funded research.
However, this agreement did not address the financial profits made from HeLa cells. In 2021, the family filed a lawsuit against Thermo Fisher Scientific, a biotech company that continued to profit from HeLa cells without compensating the Lacks estate. The lawsuit argued that Thermo Fisher and similar companies had unfairly enriched themselves from Lacks’ cells, and that her family deserved reparations.
In 2023, the family reached a confidential settlement with Thermo Fisher, marking a significant but partial victory in their decades-long fight for justice.
The Future of Medical Ethics and Genetic Rights
The Henrietta Lacks case has sparked important discussions about medical ethics, racial disparities in healthcare, and the legal ownership of biological materials. With advancements in genetic research, new legal questions continue to emerge: Should patients have the right to profit from their own biological material? Should corporations be required to compensate individuals whose cells or DNA contribute to medical advancements?
Some lawmakers and bioethicists argue for stronger regulations to ensure transparency and compensation for patients whose biological materials are used in research.
Others warn that overly restrictive policies could hinder scientific progress. Striking the right balance between innovation and ethical responsibility remains an ongoing challenge.
A Legacy That Demands Justice
Henrietta Lacks’ legacy is undeniable. Her cells have saved countless lives, but the legal and ethical issues surrounding their use highlight deep flaws in the medical system.
While recent legal actions have brought some recognition and restitution to her family, the fight for medical justice is far from over.
The case of HeLa cells underscores the need for stronger protections for patients and their families, ensuring that no one else’s body is used without their knowledge or compensation.
