Five months after it was hastily removed from the Internet in the face of harsh criticism, the genome of the widely used HeLa cell line is back online today. Not only that, but it is also now sequenced at the highest level of resolution yet for a cancer research cell line. But scientists who want to use those data must now ask for permission from a committee that includes descendants of the woman whose cells were taken—without her consent—62 years ago.
The HeLa cell line is named after Henrietta Lacks, a woman whose aggressive cervical cancer killed her in 1951. Researchers used cells sampled from that tumor to create the HeLa cell line, the first and now by far the most commonly used in cell biology laboratories. Lacks herself was all but forgotten until science journalist Rebecca Skloot published a book, The Immortal Life of Henrietta Lacks, that revealed how insensitively biomedical researchers have treated the family over the decades.
The HeLa genome fracas began on 11 March when researchers based at the European Molecular Biology Laboratory (EMBL) in Heidelberg, Germany, published the first HeLa genome sequence and an analysis of its content. Skloot contacted the family and confirmed on her blog that EMBL had never contacted Lack’s relatives. Online social networks erupted with criticism, particularly from scientists. In response, the EMBL team took the genomic data offline just hours later.
Soon after, Skloot spoke with Francis Collins and Kathy Hudson, director and a deputy director, respectively, of the U.S. National Institutes of Health (NIH). “They offered to meet with the Lacks family,” she told ScienceInsider by phone. “This is exactly what the Lacks family has always wished for.” The family asked Skloot to help set up a face-to-face meeting.
That happened in early April at Johns Hopkins University in Baltimore, Maryland, with representatives of the Lacks family talking with Collins, Hudson, and a few other scientists and physicians. The family learned about genome science, the risks and benefits, and the possible options for protecting privacy and consent. “It was a beautiful thing,” says Skloot who, at the family’s request, sat in on the meeting by speaker phone. It proved to be the first of several meetings through the summer between the family and NIH representatives. Together, they crafted a new set of guidelines for how HeLa data can be accessed while respecting the wishes of the family.
HeLa genome data will now be kept in the NIH’s database of Genotypes and Phenotypes (dbGaP). To gain access to those data, researchers must apply for permission. Among the criteria for access, any resulting research paper must include an acknowledgment to the Lacks family, and all future HeLa genome data must be deposited in dbGaP. Applications for access will be vetted by a committee of that includes two members of the Lacks family. This process will be required of all NIH-funded researchers, Collins says, and other scientists will be “strongly urged to do the same.”
The first researchers to use the new system are on a team led by Jay Shendure, a geneticist at the University of Washington, Seattle. Their genomic study of HeLa cells, published online today in Nature, not only provides high enough resolution to reveal the cells’ full repeat-rich sequence—which has hampered previous efforts—but it includes sequencing of multiple lines of HeLa cells.
The first surprise is that the HeLa genome has been “remarkably stable,” Collins says, in spite of evolving for 6 decades in different laboratories around the world. The second is the discovery of a human papillomavirus inserted within the HeLa DNA just upstream of Myc, a regulatory gene known to cause cancer when its expression runs out of control. This could be not only the reason for the aggressiveness of the cancer that killed Henrietta Lacks, but also the genetic trait that makes HeLa such a robust, self-perpetuating cell line.
“Some will surely say that our solution [for sharing the data] is too little too late,” NIH’s Hudson says. “We are aware that any lab with the right equipment can sequence the genome without permission.” But Collins is confident that scientists will follow the new policy, even if not bound by funding contracts with NIH. “The [EMBL] investigators have agreed to follow exactly the path we’re describing here,” he says. “That’s a good indication that the scientific community intends to take this with great seriousness.”