About 60 years ago, an American doctor removed cancer cells from a poor, black patient named Henrietta Lacks without her knowledge or consent. Those cells eventually helped lead to a multitude of medical treatments and laid the groundwork for the multibillion-dollar biotech industry.
The Baltimore woman’s saga was made famous by the 2010 best-seller “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 acknowledgement 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.”
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 committee.
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