Henrietta Lacks died of cervical cancer in 1951 and, ever since, samples of her uniquely immortal cancerous cells have been used in scientific research, sparking great leaps in medical knowledge.
But the cells—taken without her knowledge or consent—have also fueled controversy and called into question the ethical underpinnings of the research they made possible. Her story, made famous in the book, The Immortal Life of Henrietta Lacks, by science writer Rebecca Skloot, underscores the continuing need—65 years after her death—for society to find a way to balance the advancement of medical knowledge with the protection of individual rights.
At a February 22 bioethics forum at Baxter Lecture Hall, Caltech president Thomas F. Rosenbaum introduced a panel of Caltech faculty that examined the ethics of using Lacks's cells—known as HeLa cells—along with issues of privacy, informed consent, and who profits from the technologies her cells engendered. Caltech trustee Ronald L. Olson moderated the panel of Caltech faculty, which featured David Baltimore, President Emeritus and the Robert Andrews Millikan Professor of Biology; Ellen Rothenberg, the Albert Billings Ruddock Professor of Biology; Barbara J. Wold, the Bren Professor of Molecular Biology; and Changhuei Yang, professor of electrical engineering, bioengineering, and medical engineering.
The evening event revisited a topic that incoming freshmen had tackled earlier in the academic year in roundtable discussions of the book, which the students had been asked to read prior to their arrival at Caltech.
"HeLa cells were a miracle," said Baltimore, who has used them in his research since 1962. After noting their incalculable value—and how rare it was to have found cells that underwent the specific mutations that conferred their ability to divide indefinitely in culture—he brought the discussion back to the question of who owns the cells.
"So it seems to me the question is, what rights does she have as a consequence of this rare, basically random event, that made her cells different than anybody else's cells? . . . We are the product of a genetic lottery. What rights do we get as a consequence of our particular genes? Everyone else around us has a representation of those same genes, but not identical. What is ownership in this case?"
Rothenberg discussed how the cells have enabled key advances in molecular biology, stem cell research, and immunology—advances that would have been considered "complete science fiction fantasy" when Lacks was alive. Because the innovations her cells made possible would have been impossible to foresee, questions naturally arise as to whether Lacks could have understood the ramifications of her consent, had it been sought.
The structure of DNA was only discovered two years after Lacks' death, and the revolution in molecular biology that followed completely transformed the possibilities for use of any human cells that were able to grow in culture. "How could she possibly have given informed consent? In the case of a rapidly advancing field like molecular biology, there's no way she could have been asked at that time what she was really consenting to," Rothenberg said.
When the conversation returned to ownership of a patient's cells, and who should profit from their use, Rothenberg pointed out that simply saying the patient owns them, period, could generate a raft of unintended consequences. For example, medical institutions might, for legal liability reasons, refuse to accept certain tissue samples, hampering the delivery of personalized medicine to patients. Equally disturbing, she says, would be the possibility that the commercially valuable products of cells might incentivize individuals to view a cancer-patient relative "as a possible cash cow, and sell their tissues in the hopes of winning the lottery. . . . You definitely don't want people to be in a position where they or their family members want to sell parts of their body because they're starving."
Wold said her research seldom involves HeLa cells but, she added, "that doesn't mean I'm not an avid consumer of what's been learned over 60 years of studying them." She hailed the "beautiful science" the cells have engendered, but lamented the scientific community's repeated failings in communicating with and involving the Lacks family over the years as to how the cells were being used and what was being learned from them. For example, she said, teams of researchers in Germany and at the University of Washington sequenced and published the HeLa genome in 2013 and made the information freely available worldwide. In doing so, however, they made portions of the family's genome public—without thinking to seek the family's approval or tell the family what was happening. The research community "quickly recognized this as a catastrophe," said Wold, prompting the creation of a board that includes Lacks family members and now regulates access to the data.
Such ethical considerations continued during the event's Q&A, which stirred discussion about such critical questions as how to address medical privacy when one family member's consent might make public another family member's information, and whether proposed consent rules might jeopardize access to older cell lines that were obtained prior to a stricter consent regime.
Yang, whose lab has used HeLa cells since 2008, said he only recently learned about the ethical concerns around their provenance, adding, "Honestly I was quite surprised to find there were all these [controversies]. . . . As an outsider to American culture—I actually grew up in Singapore—my instinct would be that the DNA is a common good, not personal property. If my cells would be useful for research, I would gladly give them up without any expectations."