NEW YORK (Reuters) - Information about the most famous and valuable human cells in the history of science is about to become a little harder for researchers to get.
The National Institutes of Health announced on Wednesday that it had reached an agreement with the family of the late Henrietta Lacks, the African-American woman whose cancer cells scientists took without her permission 62 years ago and used to create an endlessly replicating cell line now used in countless labs worldwide.
Under the unprecedented pact, a grandson and a great-granddaughter of Lacks, whose story was told in the 2010 best-selling book "The Immortal Life of Henrietta Lacks," will help decide which biomedical researchers will have access to the complete genome data in cells derived from her cervical tumor, called HeLa cells. That data - which can be used to infer medical and other information about Lacks' family - will be stored in a secure, NIH-controlled database.
"This is a novel and historic agreement," NIH director Dr Francis Collins told reporters, one that will "protect the family's interest and also further their commitment to biomedical research." Collins and bioethicist Kathy Hudson, NIH deputy director for science, outreach, and policy, wrote about the agreement in an essay in Nature published on Wednesday.
The decision applies only to researchers funded by NIH, which said it "encourages" other scientists to abide by the agreement. Because DNA-sequencing technology is cheap and ubiquitous in genetics labs, the HeLa genome has been partly sequenced many times, and can easily be fully sequenced again.
"Sequencing" refers to determining the precise order of the chemical letters on a person's genome, which is the full library of his or her genetic information. Bits and pieces of that sequence spell out, for instance, whether someone is at risk of diabetes or Alzheimer's or other genetic traits, as well as personal traits like the consistency of ear wax.
These loopholes in the access agreement significantly weaken the NIH move, said Mark Gerstein, a computational biologist at Yale University who has raised concerns about threats to genetic privacy. "I doubt NIH will get blanket agreement from scientists in every country" to follow its protocol, "so it's not clear what the agreement will be able to accomplish."
Collins emphasized that the plan to control access to the HeLa genome is a unique response to the fact that Lacks' descendants are publicly known. "This should not be used to set a precedent for other cell lines," he said.
Under U.S. guidelines, it is still possible to use biological samples "to generate whole-genome sequencing data without the knowledge or permission of the person providing the sample," Collins and Hudson noted, as long as the specimen cannot be matched to a named person.
But thanks to technological advances, nonidentifiability is increasingly illusory. Earlier this year scientists led by Yaniv Erlich of the Whitehead Institute for Biomedical Research in Cambridge, Massachusetts, reported that they had managed to identify one person whose genome data - supposedly cloaked in anonymity - had been published, and could do so for others.
All it took was cross-referencing genomic data with publicly available genealogical, DNA and other information, they reported.
INSULT TO LACKS
NIH's decision to control access to the HeLa genome was prompted by a recent scientific paper that many geneticists and bioethicists viewed as one more insult to Lacks and her family.
In February 1951, physicians at Johns Hopkins Hospital in Baltimore took a biopsy of Lacks' aggressive cervical cancer when the tobacco farmer and mother of five was 31. The tissue sample, taken without her knowledge, gave rise to the first line of human cells that could grow endlessly in lab dishes.
Lacks died eight months later, decades before federal law prohibited taking biological samples without consent. Her cells, however, seem immortal, and have been used for both basic biomedical research and the development of polio and other vaccines, cancer therapies, in vitro fertilization techniques, and drugs for herpes, leukemia, influenza, hemophilia and Parkinson's disease. Although HeLa cells came from a tumor, that does not prevent them from being used to study some normal processes.
For decades her children did not know that her cells - the subject of more than 74,000 scientific papers - were being used. Many were profoundly disturbed when they learned that part of the mother who was taken from them as a young woman lived on in labs that did not even know that "HeLa" stood for a real person.
Rebecca Skloot's 2010 book about the origin of HeLa cells began to right that wrong. But the family was "shocked and disappointed" last March, said granddaughter Jeri Lacks Whye, when researchers in Germany published a paper that revealed the full HeLa genome. The European Molecular Biology Laboratory, which posted the HeLa genome sequence in an open-access database, said at the time: "We cannot infer anything about Henrietta Lacks's genome, or of her descendants, from the data generated in this study."
In fact, with readily available online tools that translate sequence data, an expert could infer what disease genes and other DNA Lacks' descendants carry.
The information "was out there for anyone to view with a click of a button," Whye said. "It seemed like history was repeating itself" as scientists exploited HeLa cells with no consideration for Henrietta's family.
Skloot brought the paper to the attention of the family and the NIH's Collins. When the family asked the German researchers to remove the DNA data from the public database where they had posted it, they did so. It had been posted for several days.
The episode prompted NIH, encouraged by Skloot, to meet with the Lacks family. The result is the new agreement, which Collins called "a path forward that respects (the family's) wishes and allows science to progress."
A newly formed group at the NIH will review scientists' applications for access to the full genome sequence data from HeLa cells. The six members - composed of scientists, bioethicists and two of Lacks' descendants - will base its decision on whether the researchers are doing biomedical research, promise to keep DNA-sequence data in a secure location, do not contact the family, and disclose any commercial interests.
In addition, researchers who receive NIH funding will be expected to deposit further sequencing data from HeLa cells into an NIH database that scientists will access through this process. They will also be asked to include in their publications and presentations "an acknowledgement and expression of gratitude to the Lacks family," NIH said, much as they acknowledge their source of funding.
"The Lacks family is honored to be part of an important agreement that we believe will be beneficial to everyone," Whye said.
More than 60 years after Lacks' cells were taken, they are still the basis for groundbreaking science. In this week's Nature, scientists report that they may have solved the mystery of why Lacks' cells have been able to survive and proliferate in labs for 60 years, giving rise to innumerable cell lines, where other cancer and normal cells die out.
The human papilloma virus, which causes cervical cancer, apparently inserted itself near a cancer-causing gene on chromosome 8 in Lacks' genome, found Jay Shendure of the University of Washington and his colleagues. The HPV activated the "oncogene," perhaps accounting for the aggressiveness of the cancer that killed Lacks as well as HeLa cells' ability to reproduce every 24 hours and never stop.
(Reporting by Sharon Begley; Editing by Michele Gershberg and Prudence Crowther)
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