Henrietta Lacks was only 31 when she died of cervical cancer in 1951 in a Baltimore hospital. Not long before her death, doctors removed some of her tumor cells. They later discovered that the cells could thrive in a lab, a feat no human cells had achieved before.
Soon the cells -- nicknamed HeLa cells, using her name -- were being shipped from Baltimore around the world. In the 62 years since -- twice as long as Lacks' own brief life -- her cells have been the subject of more than 74,000 studies, many of which have yielded profound insights into cell biology, vaccines, in vitro fertilization and cancer.
In the journal Nature on Wednesday, a team of University of Washington scientists described the HeLa genome, which they recently sequenced. The project is a tour-de-force of DNA analysis, befitting the best-studied human cells in the world.
But the research is exceptional for another reason. Henrietta Lacks, who was poor, black and uneducated, never consented to her cells' being studied. For 62 years, her family has been left out of the decision-making about that research.
Now, over the past four months, the National Institutes of Health has come to an agreement with the Lacks family to grant them control over how Henrietta Lacks' genome is used.
"In 20 years at NIH, I can't remember something like this," Francis S. Collins, the institute's director, said in an interview.
Though the agreement, announced Wednesday, is a milestone in the saga of Henrietta Lacks, it also draws attention to a lack of policies to balance the benefits of studying genomes with the risks to the privacy of people whose genomes are studied -- as well as their relatives.
As journalist Rebecca Skloot recounted in her 2010 best-seller, "The Immortal Life of Henrietta Lacks," Lacks' cells were removed without her consent. She gave no permission for scientists to rear them.
Compounding that injustice, the scientists studying the cells and developing lucrative medicines from them did not inform her family or share any profits. Her family discovered that their mother was, in effect, scattered across the planet in 1973, only when a scientist called to ask for her children's blood to study genes inherited from her.
For the Lacks family, this March brought an intense feeling of déjà vu. European Molecular Biology Laboratory scientists published the genome of a line of HeLa cells, making it publicly available for downloading. Another study at the University of Washington, sponsored by the National Institutes of Health, was about to be published in Nature. The Lacks family was made aware of neither project.
"I said, 'No, this is not right,' " Jeri Lacks Whye, one of Henrietta Lacks' grandchildren, said in an interview. "They should not have this up unless they have consent from the family."
When the University of Washington researchers had originally applied to the NIH for a grant to sequence the HeLa genome, no red flags went up about contacting the Lacks family. "I don't think we would have anticipated this, had we looked at the grant," Kathy L. Hudson, the NIH deputy director for science, outreach and policy, said in an interview. "Hindsight is 20/20."
Once reports of the controversy emerged, the European researchers took down their public data, and the University of Washington paper's publication was halted. Dr. Collins and Ms. Hudson made three trips to Baltimore to meet with the Lacks family to discuss the research, and what to do about it.
"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," Ms. Lacks Whye said.
The Lacks family and the NIH settled on an agreement: The data from both studies should be stored in the institutes' database of Genotypes and Phenotypes. Researchers who want to use the data can apply for access and will have to submit annual reports about research. A so-called "HeLa Genome Data Access working group" at the NIH will review the applications. Two Lacks family members will be on the working group.
With this agreement in place, the University of Washington researchers were then able to publish their results. Their analysis goes beyond the European study in several ways. Most important, they show precisely where each gene is situated in HeLa DNA.
Richard Sharp, director of biomedical ethics at the Mayo Clinic, said he thinks the agreement "was pretty well handled." But he warned that it is only a "one-off solution," rather than a broad policy to address the tension between genome research and the privacy of relatives, now that recent research has demonstrated that it is possible to reveal a person's identity through sequencing.