The cells of Henrietta Lacks, a black woman who died at Johns Hopkins Hospital in 1951, have led to countless medical advances both at Hopkins and around the world. The story of her life and her HeLa cells are the subject of a 2010 book by Rebecca Skloot, The Immortal Life of Henrietta Lacks, which has quickly become required reading at many schools and universities in the U.S.
Now, her family is planning on suing the Hospital for obtaining the cells without the family’s permission and subsequently “profiting” off them, according to her son Lawrence. When the Hospital took the cells from Lacks, who suffered from cervical cancer, technically the Hospital did nothing illegal. However, researchers’ subsequent use of the cells to make incredible scientific discoveries unfairly thrust the Lacks family into the spotlight while many institutions, including Hopkins, benefited.
Members of the Lacks family argues that no permission was given to harvest the cells from Lacks in the first place, and that an autopsy was then performed against the family’s wishes.
Though the family formally made peace with the Hospital in 1970 when they first discovered the cells had been acquired without permission, they want to pursue this lawsuit to protect Lacks’ legacy; they insist they aren’t just looking for a pay day. Lawrence and his son Ron told The News-Letter that the recent publication of The Immortal Life of Henrietta Lacks in 2010 and the upcoming release of an HBO movie starring Oprah Winfrey spurred the lawsuit. They say they never agreed to the publication of the book nor the production of the film.
The Henrietta Lacks case is not the only notable instance of questionable research ethics involving Hopkins. Just last year, the University was sued for conducting a study in Guatemala in the 1950s, during which hundreds of people were forcibly injected with multiple sexually transmitted diseases so that researchers could explore different treatment options. Though the case was dropped because the statute of limitations had run out, it’s another example of Hopkins pursuing scientific discoveries at the expense of good ethics.
At Hopkins, we pride ourselves on being one of the leading research universities in the world, with over $2.3 billion spent on research each year, but where exactly do our ethical boundaries lie? At what cost have our scientific breakthroughs come?
The Editorial Board believes that as a leading research institution, Hopkins needs to set a good example in proper research ethics. We acknowledge that the University is at the forefront of scientific ethics studies and hosts institutions like the Berman Institute of Bioethics, founded in 1995. We believe that such vigilance must continue, especially in light of recent events.
Although current laws and regulations cannot be retroactively applied to events in the past, Hopkins should acknowledge their past mistakes rather than erasing them out of history or pretending they never happened. If the Lacks and Guatemala incidents had occurred today, they would not only be illegal, but would have sparked global outrage.
Hopkins should still stand up and take responsibility for the role it played not only in these two cases, but also for its questionable history in the past, especially its dealings with patients of color. The University has begun to acknowledge its role in stealing the cells and has attempted to honor Lacks’ legacy and contribution through programs such as the Henrietta Lacks Memorial Lecture as well as scholarships and community awards in her name.
As ethical standards become increasingly strict, this shift should be reflected in the research practices at Hopkins. It is incredibly important that Hopkins own up to its own unsavory history and use it as a lesson for the future.