Moral Justice, But No Reparations, for Henrietta Lacks

After more than six decades of medical breakthroughs that were made possible with the cells of Henrietta Lacks, justice is finally being served to her family.

The National Institutes of Health announced last week that representatives from the Lacks family will serve on the board that determines the biomedical uses of the “HeLa” cells, and that any future research publications using data collected from them must acknowledge the Lacks family.

Lacks was an impoverished black mother of five who died of cervical cancer in 1951 in the colored ward of Johns Hopkins Hospital. Unbeknownst to her or her family, doctors removed tumor samples from her cervix without permission. Researchers realized that, unlike other cells, these cells—named HeLa—didn’t die after a few divisions but would multiply endlessly. Because of this, they could be used in countless biological experiments, an unprecedented advance in medical research.

The immortal cells became integral in researching treatments for polio, AIDS, cancer and many other diseases. HeLa basically revamped modern medicine while Henrietta herself, buried in an unmarked grave in Virginia, faded into obscurity. More than 20 years later, after the medical industry had made billions from HeLa, grown more than 20 tons of HeLa cells and created 11,000 patents with them, her family finally learned that Lacks’ cells had been sampled. Not only had they never been asked for permission to harvest or use the cells, they never saw a dime of the windfall profits that came of them.

The gender, race and class issues that played in the case of Henrietta Lacks would come to light when reporter Rebecca Skloot published The Immortal Life of Henrietta Lacks in 2010, connecting the HeLa phenomenon with the shameful history of experimenting on African-Americans. The bestselling book helped galvanize public opinion in favor of the Lacks family, and launched an ethical dialogue on whether we own the genetic material we’re made of. Since the Lacks case, there still hasn’t been a decisive law that protects patients from hospitals or laboratories that take genetic samples without permission. There also is no law that requires patients or their families share profits from use of their genetic materials. In other words, there’s little to prevent what happened to Henrietta  from happening again.

Though the family still won’t receive financial compensation for use of the HeLa cells, the NIH decision still gives a moral victory to Henrietta’s legacy and to her family—the first step towards rectifying a longstanding wrong.

Photos courtesy of Oregon State University via Creative Commons 2.0.


Associate editor of Ms. magazine