Can you believe that students will be starting college next month? At Millsaps College all incoming freshman are required to read one book. Professor Patrick Hopkins of Millsaps gives us an introduction to this year’s pick.
This fall, the incoming freshman class of Millsaps College will be reading The Immortal Life of Henrietta Lacks, by Rebecca Skloot. This surprising bestseller is a journalistic examination of the case of a poor black tobacco farmer with cancer whose unusual cancer cells changed the history of medicine and raises fascinating questions about medical ethics. In 1951, Lacks went to Johns Hopkins Hospital to have an abdominal lump examined. Johns Hopkins was the only hospital in the general area that treated black patients. Physicians found a tumor in Lacks’ cervix and sent a sample to the pathology lab. The cells eventually were given to a researcher who found that they had an unusual property—unlike most cells, which died after a few days in culture, these cells would stay alive and grow. They were essentially immortal. As such, they could be used in laboratories for many different kinds of experiments, be perpetually reproduced from the initial sample, and easily shipped and sold.
With this new in vitro cell research medium, a revolution in medical research began. Named HeLa, after Lacks, the cells were put into mass production, sold and shipped, and became crucial in research involving the development of the polio vaccine, cancer, AIDS, radiation poisoning, chemical toxicity, and viral vector treatments. Not surprisingly, the value of HeLa cells translated into patents, careers, and lots and lots of money. Henrietta Lacks, however, died in the same year she went to Johns Hopkins, never gave permission for developing her tumor cells, and was never told about the fate of her unique cells. Her family didn’t know about Lacks’ huge influence on medicine until many years later.
Below: Author Rebecca Skloot interviews Henrietta Lacks’ cousin Cliff Garrett in Virginia, 2009.
While an intriguing tale of medicine, Lacks’ story obviously also brings up questions of privacy, racism, control of one’s body, and profit. However, the questions the case raises are not quite as simple as many people seem to think. Upon first hearing about Lacks and HeLa cells, it’s not uncommon for people to react by saying that Lacks surely should have been asked for permission to use her cells, that Lacks surely should have been paid for her cells, and that Lacks’ family surely should be getting a portion of the profit from all that HeLa money. But is it that simple?
Below: Henrietta Lacks with her husband David Lacks.
It was 1951. Rules and expectations for participants in medical research were just beginning to be debated and it would take years before the norm in research was that patients should be asked for permission to use their biological specimens for research. Would it surprise you to find out that even today, in 2013, a patient with cells as valuable as Lacks would be no more likely to share in profit from those cells than she? To find out that cells could be immortalized and patented and make millions of dollars but the patient receive nothing? To find out that patients entering research studies are explicitly told they won’t make any money from any commercial products their cells might result in?
That’s the way it works. But here’s the interesting thing—the thing that our students will hopefully discuss and consider. If society were to say that a patient could sell, or lease, or profit-share in her cells, wouldn’t that mean that she owned her cells? Wouldn’t that mean that she owned her body? Perhaps you would say “Of course she does. Who else would own it?” But now think of the implications of the idea that we own our bodies or that anyone does. Ownership means our bodies are property. As property, our bodies would then fall under all the traditional legal and moral rules governing other property. We could sell our bodies. Buy others’ bodies. Inherit bodies. Do we want to say that you could sell your kidney? Buy someone’s corneas? Trade your Braves tickets for a bone graft?
Below: Deborah Lacks seeing her mom’s cells for the first time.
These consequences might strike you as far- fetched, but why would they if we said bodies are property? A major point of property is to give us the power to engage in commerce. Making our bodies and its parts our property would be a huge legal shift. And in fact, this idea has been tested in the courts. In the 1990 case of Moore v. Regents of the University of California, the California Supreme Court dealt with just such a case as Lacks. John Moore was being treated for leukemia. Some cells were excised. They were immortalized by researchers. They became a major commercial success. Moore found out later what had happened and sued for a portion of the profit. The court ruled that he had no right to any money because (among other legal issues) establishing a precedent of people owning body parts would be a dangerous step toward creating a free market for human body tissue.
In addition to social consequences, we can also ask what makes anything our property in the first place. The answer is usually that we bought it, were given it, or made it ourselves. But Lacks and Moore didn’t buy these cells. They certainly weren’t given the cells. They didn’t even really make the cells. Yes, they ate food and drank water, but the cells just grew automatically. In fact, in both cases the reason they went to a physician was precisely to try to destroy those cells. This kind of reasoning is related to the very recent US Supreme Court case of Association For Molecular Pathology v. Myriad Genetics, Inc. The court ruled in that case that a company could not patent human DNA because they just discovered it — nature created it. However, a company could patent synthetic human DNA, because in fact the company did create that.
The case of Henrietta Lacks, then, is no simple morality tale. Read critically, it makes us ask, “What really is fair? What really is the right thing to do? What should be owned and what should not? What should be sold and what should not? What really went wrong, if anything? What should be done now?”
And that’s exactly why our students are reading it.
Written by Patrick D. Hopkins
Professor of Philosophy (Millsaps College)
Affiliate Faculty (Center for Bioethics and Medical Humanities at the University of Mississippi Medical Center)
Comments are closed.