The exploitation of Henrietta Lacks: abuse for the advancement of medicine

Say her name. Say it out loud. Henrietta Lacks, here is a woman largely erased from the scientific narrative. Even Oprah couldn’t elevate her story enough to permeate the veil. While the story of a woman (of color) exploited for the economic or social gains of others, is painfully familiar, the story of one Henrietta Lacks and her now immortal cells is not nearly familiar enough.

Thanks to the efforts of authors, (Rebecca Skloot and HBO films among others) resolute to tell the story of Henrietta Lacks, and what her HeLa cells mean to medicine, the world is starting to know the origin story for many of the greatest medical advances in modern history. Her gift truly cannot be overstated.

You may already know that Lacks died in 1951 from cervical cancer. And, that prior to her passing her surgeon removed samples from her tumor (without her knowledge or consent) and preserved them for research. Right. And?

Henrietta’s cells were different. HeLa cells replicated at an unprecedented rate reproducing an entire generation in just 24 hours (this can take anywhere from two to five-plus years for most cells). And, researchers let them do just that, providing themselves and essentially the scientific world with an unlimited supply of human cells for research.

To know why that is so significant, it helps to understand the human genome and cell division. But, in the simplest terms, by studying her cancer cells, scientists were able to determine that if even one abnormality sneaks its way into the natural process of cell division, cells can multiply uncontrollably which in turn, causes cancer.

To this day, there are multiple millions of HeLa cells on ice in research facilities in the U.S. alone. Her cells have helped scientists develop drugs to treat everything from HIV, polio, leukemia, flu, STDs to Parkinson’s disease and hemophilia.

Specifically, HeLa cells have helped researchers understand the genes that cause cancer and those that suppress it. The list goes on and on (if you are curious, the National Institute of Health has a timeline of significant research advances made possible by HeLa).

Great right? Not so fast. Neither Henrietta Lacks nor her family had knowledge of samples taken from her. In fact, her husband has been quoted as recalling that he specifically did not grant consent for collection after her passing. Twenty years after her death her family was informed of the life her cells had taken on. By then, of course, it was far too late to do much about it.

Why tell this story now? Why pick up HeLa after books, articles and movies have already been produced telling her story? Simple. Ask five friends (as I did) if they know who Henrietta Lacks is. Ask them if they know what HeLa was. Ask them if they know what her cell line means to medical research. You may very well receive more than a few blank stares.

The story of a woman of color, exploited for the advancement and profits of entities unknown to her, a novelty? Not even close. There is a long, well-documented history of the atrocities inflicted on women of color for the sake of “progress.”

Does the name James Marion Sims ring a bell? Largely regarded as the “father” of modern gynecology, Marion notoriously conducted medical experiments on enslaved women in the antebellum South. His records indicated that he performed upwards of 30 operations on one enslaved woman named Anarcha. Thirty. Operations. Without. Anesthesia.

What was done to Henrietta Lacks is perhaps the most egregious ethics violations in modern medical history (post antebellum) because of the vast and far-reaching implications her cells have had on medicine. That’s not to say that the experiences of untold thousands of other victims are less valid. Just that this violation set and reinforced a dangerous precedent in medical consent that remains to this day.

Did this physician knowingly violate her? It is likely that he did not see this as an ethics violation at the time. Yet, with a health care industry built on the HeLa cell line, reaching revenues in the $100 billion range, even in the so-called modern era, African American subjects in medical research are persistently abused and exploited. For instance, the so-called “Mississippi Appendectomies,” which amounted to forced sterilization of poor African American women without their knowledge or consent from the 1920s well into the 1980s.

As reported by Skloot, doctors performed hysterectomies under the pretense of appendectomies in order to prevent poor black women from reproducing and to give young, inexperienced doctors the opportunity to practice the hysterectomy procedure. Yet the mainstream narrative is quite content to evaluate these atrocities based on the values and social constructs of the time.

About that. In the year 2020, and despite an increased focus on clinical outcomes and standards of care system-wide, women of color are three to four times more likely to die from pregnancy-related causes than white women, according to the Centers for Disease Control and Prevention. Spoiler alert: institutional racism is still an epidemic in health care and it overwhelmingly impacts clinical outcomes for women of color.

The HeLa cell line is regarded as the most important thing to happen to medicine in the last century. The duplicity of this is agonizing when you consider the personal cost to this woman and her family. Not to mention the ethical quagmire it presents.

Henrietta Lacks has a story which must be told. Again, and again (and again) until HeLa is on the lips of students and scientific scholars for generations to come. Throw it like a grenade into unsuspecting dinner parties. Or start with a simple google search.

Consider this, standing on the shoulders of countless victims of medical “research” isn’t free. It would be easy to passively consume the HeLa story and file it away under tragedies you don’t like to think about. But, remember, anyone can speak truth to power and if we aren’t taking every opportunity to do so, why are we even here?