Imagine you own a plot of land under which oil is found. Whether or not you have a right to a share of the wealth is determined by whether you own the mineral rights. Suppose you own a field and one day you discover a previous owner buried their life savings on the property 160 years ago. This year the owner of a cornfield in Kentucky found more than 700 gold coins dated between 1840 and 1863 buried on his land. Does he own those coins? Generally, unless there was some compelling evidence that the original owner was the government or it was used in a crime.
How about if your doctor was treating you for cancer and discovered an interesting phenomenon in your cancer cells? Let’s say your doctor found your cancer cells could survive outside your body and propagate into perpetuity, unlike other human cells previously harvested. What if your doctor and hospital were so taken by what he found they shared cell cultures with other researchers? What if the cells harvested from your body had characteristics so valuable (and irreplaceable) that a multibillion industry sprang up based on your cells? Should you own any rights to these cells if they were produced by your body and nobody else’s body could produce them? This actually happened to a woman named Henrietta Lacks, who sought cancer treatment at Johns-Hopkins in 1951.
Lacks, a Black mother, sought treatment for cervical cancer at Johns Hopkins Hospital in Baltimore in 1951. She died from the disease that October at the age of 31. During her treatment, researchers took cells from her tumor sample without her knowledge or consent. Federal regulations requiring patient consent weren’t yet in place. Sent to a lab, her cells proved unique and invaluable for scientific research. While growing human cells in a lab is often difficult, Lacks’s cells remained alive and kept replicating.
The cells, which became known as HeLa cells, played a critical role in medical breakthroughs like the polio, HPV and Covid-19 vaccines and in vitro fertilization. They have been used in tens of thousands of studies and in research about cancer and AIDS.
Among the important scientific discoveries of the last century was the first immortal human cell line known as “HeLa” — a remarkably durable and prolific line of cells obtained during the treatment of Henrietta’s cancer by Johns Hopkins researcher Dr. George Gey in 1951.
Although these were the first cells that could be easily shared and multiplied in a lab setting, Johns Hopkins has never sold or profited from the discovery or distribution of HeLa cells and does not own the rights to the HeLa cell line. Rather, Johns Hopkins offered HeLa cells freely and widely for scientific research.
Over the past several decades, this cell line has contributed to many medical breakthroughs, from research on the effects of zero gravity in outer space and the development of polio and COVID-19 vaccines, to the study of leukemia, the AIDS virus and cancer worldwide.
Indeed, according to an article in The New York Times, HeLa cells have been used in an untold number of scientific experiments around the world:
Research using the HeLa cells has led to the development of treatments for diseases including cancer, Parkinson’s and the flu. The cells have also been used by researchers around the world and have been cited in more than 110,000 scientific publications, according to the National Institutes of Health.
Johns-Hopkins is careful to say they never profited from HeLa cells (they gave them away) because when Mrs. Lack’s family first discovered her cells spawned a multibillion industry, they wanted their share.
Lacks’s family was unaware about the use of her cells until the 1970s. They never received compensation stemming from the money earned by companies using the cells…
The family announced the first settlement with firms profiting from Henrietta’s cells. According to The New York Times:
The family’s lawsuit, which was filed in U.S. District Court in Maryland in October 2021, accused the company, Thermo Fisher Scientific, of selling the cells and trying to secure intellectual property rights on the products the cells had helped develop without compensating the family or seeking their permission or approval.
There is a fair amount of controversy about whether Henrietta Lacks’ family should share in the profits from HeLa cells. A number of years ago I recall reading about a survey where doctors and patients were asked whether patients should share in any property rights for unique discoveries made while treating them. As one would expect doctors’ and patients’ opinions differed. Patients thought they should share in any discoveries, while doctors thought they should not have to share benefits. In 1990 the Supreme Court in California ruled patients don’t have any financial rights because it would slow scientific advancements.
To read more about the debate on whether patients own the cells taken from their body see: Paying tissue donors: The legacy of Henrietta Lacks