|February 18, 2010|
Bestseller about Henrietta Lacks highlights the human subjects behind research
Author consulted with Berman Institute’s director throughout for bioethics expertise
In 1950s America, obtaining tissue samples without consent from patients undergoing cervical cancer treatment was standard practice: The procedure was carried out hundreds of times every year.
But when physicians at Johns Hopkins Hospital collected samples from Henrietta Lacks, it triggered a series of events that has unfolded into a remarkable tale of scientific endeavor, troubling ethical quandaries, and one woman’s immortality.
Lacks was a poor, black tobacco farmer who lived in Baltimore with her husband and five children. Suffering from cervical cancer, she was admitted into the public ward at Hopkins—a charity care facility and the only hospital in the area that treated African Americans.
Before radiation was administered, dime-size samples of cancerous and healthy tissue were taken from without her consent. At the time, no one at Hopkins considered this an issue: In the public ward, this was standard practice, not only for biopsies, but also because scientists would use the samples for research.
Lacks died in 1951, but her tissue samples did not—they went on to become the first “immortal” cell line in scientific history. Dubbed HeLa (hee-lah) cells, after the first two letters of Henrietta and Lacks, their cancerous characteristic allows them to multiply relentlessly, giving researchers a never-ending supply of identical human cells to test, infect and otherwise manipulate in order to develop vaccines and study cell functions and genetics.
Johns Hopkins freely shared the cells and shipped vials of them to researchers around the world. The diaspora of HeLa cells across the globe in has led to two Nobel Prizes, the development of the polio vaccine and key, life-saving advances in areas ranging from gene mapping to in vitro fertilization and AIDS research.
According to science journalist Rebecca Skloot, author of the new book The Immortal Life of Henrietta Lacks, HeLa cells launched a multibillion-dollar industry in which commercial enterprises grew batches for large-scale use.
Although Lacks’s cells were taken without her permission—60 years ago, the notion simply did not figure when it came to taking patients’ tissue for research—that didn’t make it right, according to Ruth Faden, Ph.D., director of the Johns Hopkins Berman Institute of Bioethics. In an article about the history of HeLa cells (also written by Skloot) that appeared in Johns Hopkins Magazine in April 2000, the issues that Faden said the Lacks saga raised then still apply now:
“One is the question of consent,” Faden told Skloot, “and the other is what, if anything, is morally or legally due to a person if something of commercial value is developed from their cells.”
Since Lacks’s death, the field of bioethics has been established, and today, obtaining informed consent from human research subjects is commonplace. Furthermore, the collection and banking of biological samples is an area where some progress has been made. But difficult issues remain to be addressed concerning donor privacy, the just distribution of consenting donors across racial and socio-economic populations, and the commercialization of what is, after all, human tissue.
Faden’s second question, regarding compensation, also remains a challenge. In a Feb. 12 Baltimore Sun opinion piece this year, Faden makes the case for a society in which people’s tissues and cells would be offered up freely to fuel biomedical innovations that would benefit us all. But such unfettered access, she argues, would first require national health-care reform to ensure that the benefits would truly be universally accessible.
Johns Hopkins never patented HeLa cells, nor did it sell them commercially or benefit in a direct financial way. The university also acknowledged the contributions to advances in biomedical research made possible by Henrietta Lacks.
And yet, ongoing misunderstandings and mistrust expressed by Lacks’s family members demonstrate that more must be done to address their concerns. More broadly, prestigious research institutions such as Johns Hopkins must work harder to engender trust and form stronger bonds with the under-resourced communities that often surround them.
The Berman Institute, along with the Urban Health Institute, co-sponsored a visit by Skloot on Monday, Feb. 22. She read and discussed her book at the St. Frances Academy Community Center. Members of the Lacks family were in attendance.