It's taken 62 years, but researchers finally asked Henrietta Lacks's family for consent to use her cancer cells, which have been employed in over 76,000 studies since her death in 1951. Lacks, a poor, black mother of five, died of cervical cancer, but the so-called HeLa cells survived to become a staple of medical science. Journalist Rebecca Skloot called attention to the ethical issues surrounding Lacks's case in her 2010 bestseller The Immortal Life of Henrietta Lacks. Now the Lacks family is finally seeing some justice.
Over the past four months, the National Institutes of Health has worked out an agreement with the family so that privacy can be maintained while researchers study the cells.
When Lacks died, researchers at Johns Hopkins removed the cells from her body without her family's knowledge or consent. Since then, the cells have led to major breakthroughs in various fields of medical research — from the development of the polio vaccine, to treatment of AIDS, to the discovery of how cervical cancer develops.
But Lacks's family did not even know about how extensively her cells were being studied until 1973. One of Lacks's grandchildren, Jeri Lacks Whye, told The New York Times:
The biggest concern was privacy — what information was actually going to be out there about our grandmother, and what information they can obtain from her sequencing that will tell them about her children and grandchildren and going down the line.
Francis Collins, head of the NIH, told The Times, "In my 20 years [here], I can't remember something like this," referring presumably to scientists' tacit acknowledgment that the HeLa cell line had essentially been disseminated (until now) with minimal concern for Lacks's descendants. Were it not for Skloot's book, it is not clear that the present development would have taken place.
Before the agreement was made, two separate studies were set to be published, making a genome of a line of HeLa cells available to the public. Now, The Times reports that researchers will have to go through a “HeLa Genome Data Access working group” at the NIH to gain access to these studies. Reportedly, members of the Lacks family will have say over who studies the cell line.
Though some have warned this solution doesn't address all the issues surrounding genome research and family privacy, it is nevertheless a belated step in the right direction. Skloot, who has been widely hailed for the research she conducted to write her book, thinks the current compromise is a good one, telling CNN, "They get so much pride out of what HeLa cells have done for society and the world. They want HeLa cells to continue to do good. They just want to be part of the conversation."
Photo: an undated electron micrograph image of HeLa cells, via AP.
This article is from the archive of our partner The Wire.