The Baltimore woman's saga was made famous by the 2010 bestseller "The Immortal Life of Henrietta Lacks."
Now, for the first time, the Lacks family has been given a say over at least some research involving her cells.
Lacks' family members have never shared in any of the untold riches unlocked by the material, called HeLa cells, and they won't make any money under the agreement announced Wednesday by the family and the National Institutes of Health.
But they will have some control over scientists' access to the cells' DNA code. And the Lacks family will receive acknowledgment in the scientific papers that result.
The agreement came after the family raised privacy concerns about making Henrietta Lacks' genetic makeup public. Since DNA is inherited, information from her DNA could be used to make predictions about the disease risk and other traits of her modern-day descendants.
Under the agreement, two family members will sit on a six-member committee that will regulate access to the genetic code.
"The main issue was the privacy concern and what information in the future might be revealed," David Lacks Jr., grandson of Henrietta Lacks, said at a news conference.
Jeri Lacks Whye, a granddaughter who lives in Baltimore, called the agreement historic.
"In the past, the Lacks family has been left in the dark" about research stemming from HeLa cells, she said. Now, "we are excited to be part of the important HeLa science to come."
Medical ethicists praised the NIH action. There was no legal obligation to give the family any control over access to the genetic data.
"They're doing the right thing," said Dr. Ellen Wright Clayton of Vanderbilt University's Centre for Biomedical Ethics and Society. "Having people at the table makes a difference in what you do," she said, noting that some Native American groups have a similar arrangement with researchers.
Rebecca Skloot, author of the acclaimed 2010 book, sat in on the negotiations leading to the agreement, and she said family members never demanded money.
"This discussion wasn't about money for them," she said. Skloot noted that family members are earning income from a packed schedule of speaking engagements and have also received donations from a foundation the writer established.
Henrietta Lacks, who died in 1951 at age 31, was being treated for aggressive cervical cancer at Johns Hopkins Hospital when the cells were removed. The lack of consent was typical of the time, long before modern-day rules were put in place.
The cells were the first human cells that could be grown indefinitely in a laboratory. They became crucial for key developments in such areas as vaccines and cancer treatments.
HeLa cells are the most widely used human cell line in existence today. But Lacks died of her disease without knowing about them, and family members didn't learn of them until 25 years later.
They weren't told in the 1970s, when doctors did research on Lacks' children. And in the 1980s, family medical records were published without family consent, said Rebecca Skloot, author of the 2010 book.
The story took a new turn in March, when German researchers published the DNA code, or genome, of a strain of HeLa cells. The researchers hadn't sought permission from the Lacks family before publishing, and the family found out about it from Skloot.
"It was shocking and little disappointing, knowing that Henrietta's information was out there," Whye said. "It was like her medical records are just there to view with the click of the button. They didn't come to the family. ... It was like history was repeating itself."
After complaints, the researchers removed the genome data from public databases.
Meanwhile, a team from the University of Washington had derived a genome from a different HeLa strain with funding from the NIH and submitted it for publication.
The new agreement will restrict access to the genome data from both studies. Researchers who want to use that data will have to ask permission from the six-member committee.
Applicants will have to agree to restrictions such as not sharing the DNA information with others, reporting back on their results, and acknowledging the Lacks family in their publications.
The deal also covers any future HeLa genomes produced with NIH funding.
"They've basically put (the family) at the table where the decisions are going to be made. That's really a common-sense thing to have done," said Dr. Robert Cook-Deegan of Duke University's Institute for Genome Sciences & Policy.
The family has a legitimate right to say, "We want this to be a partnership, not an exploitation," Cook-Deegan said.
He and Clayton said the Lacks saga was so unusual that they don't expect the agreement to be repeated for other cases. But they said the deal highlights the ethical issues surrounding the handling of DNA and other biological samples from patients in research.
Clayton said she thinks it will promote the idea of controlling access to genome information, or at least obtaining explicit and informed consent from donors before putting such information in publicly accessible databases.
Cook-Deegan said the agreement promotes the idea that donors or their family should have some kind of say over how their DNA or tissue is used for research.