In 1951, Henrietta Lacks — a poor, African-American mother of five — underwent treatment for cervical cancer in the “Coloreds Only” ward at Johns Hopkins University. Before she died, doctors removed cells — without her permission — from her cervix and began culturing them. When she died in October of that year, she left behind a husband, five children, and science’s first “immortal” cell line.
Researchers discovered that Lacks’s tumor cells, which were removed without her permission, could be cultured and kept alive. The first significant use of her cells was in the creation of Jonas Salk’s polio vaccine. They have been used for AIDS and cancer research. They have been fundamental in the development of cloning, gene sequencing, and in vitro fertilization. But the fact that HeLa cells have contributed to so many life-changing — and life-saving, and life-creating — developments over the past 60 years doesn’t change the fact that they were stolen from a poor woman of color who gave no consent to be used as a research subject, even in absentia. And her family only discovered this in the mid-70s, when researchers contacted her relatives seeking still more cells from them to aid in their research.
On Tuesday, the NIH announced that they have been working with Lacks’s family to establish new rules and standards for use of the cells out of respect to the woman from whom they were taken. Under the new rules, access to Lacks’s cells will be made available on an individual basis through an application process evaluated by an NIH panel that includes two representatives of the Lacks family. The full genome will not be published in papers or online and will only be available to researchers; this was in response to the publication of a paper from the European Molecular Biology Laboratory that did just that, leading the family to request removal of the paper out of concern for their own medical privacy. EMBL pulled the paper and apologized.
The family didn’t ask for and will not receive compensation for profitable research findings resulting from use of HeLa cells. (They have sought compensation in the past.) The U.S. Supreme Court recently ruled that naturally occurring genes can’t be patented, but HeLa cells have formed the foundation of a number of medical discoveries that have resulted in patents and profits. The most significant outcome of the NIH’s talks with the Lacks family is the acknowledgement of Henrietta Lacks as the human being without whom those discoveries couldn’t have been made, rather than simply as a source of cells for culturing, testing, and culturing again — and the acknowledgement that using her as an unwitting and unconsenting subject for medical research was unethical and wrong.
Says medical ethicist Arthur Caplan, Ph.D.,
Today, consent is routinely sought today for taking tissue samples. The issue of privacy and how to protect it must now be added to that consent. Acknowledging the contributions achieved by gifts from those who will donate seems a sound policy. And discussions of commercialization, while less pressing due to the Supreme Court ruling barring patents, still ought to be part of informed consent going forward.
Henrietta Lacks allowed medicine to make great strides in the struggle against illness and premature death. Six decades later, her descendants have allowed ethics to make great strides as well.