Skloot, in a later article for The New York Times, made clear that family members were unhappy that — yet again — they had not been consulted. “I think it’s private information,” Henrietta’s granddaughter Jeri Lacks-Whye told Nature. “I look at it as though these are my grandmother’s medical records that are just out there for the world to see.” The EMBL team removed the data from public access, and hoped that a solution could be reached.
As the controversy erupted, Nature was preparing to publish an even more detailed sequence of the HeLa genome, according to senior author Jay Shendure, a genome scientist at the University of Washington in Seattle. His team, funded by the NIH, started decoding HeLa DNA in 2011, as part of an effort to develop new sequencing techniques. They also hoped that the genome would be useful for other researchers, a motivation shared by the EMBL team. They submitted their paper to Nature in November 2012.
The paper’s reviewers did not raise privacy concerns before recommending it for publication; nor did Nature, Shendure says. He considered contacting the Lacks family before publication, and restricting access. “Figuring out how to reach out to the family was very much on the table when events overtook us.”
After Skloot’s article on the EMBL paper came out in March, Collins learned about Shendure’s NIH-funded project. He saw an opportunity. He was already at work reforming the rules that govern research on human subjects. “It looked as if this was a moment to get everybody in the same room,” he says.
And so, on the evening of 8 April, Collins met a group of Henrietta Lacks’ children and grandchildren for dinner and discussion at the Johns Hopkins campus. Along with Collins was his chief adviser and two mediators from the university. Skloot phoned in to the meeting, which was to be the first of three.
Collins says that family members told him how unsettling it had been to learn about HeLa cells decades after Lacks died. They peppered Collins with questions about genetic sequencing and how Lacks’ cells had been used. “I felt like I was taking ‘Biology 101’,” says Lacks-Whye. Collins told them that Shendure’s team might have identified the genetic change that made their grandmother’s tumour so aggressive and HeLa cells so prolific. The NIH later put the family in touch with experts in clinical genetics who told them what health information could be gleaned from the genome, and the NIH offered to help family members have their own genomes sequenced and interpreted.
Collins says that he did not pressure the family to agree to the release of the HeLa genome data; he was open to leaving the NIH-funded work unpublished. But he told the family that it would be impossible to keep the data locked away. NIH researchers had calculated that 400 genomes’ worth of HeLa data are already publicly available in piecemeal form — parts of projects such as the Encyclopedia of DNA Elements — and that scientists in thousands of labs around the world could easily and cheaply sequence the cell line themselves.
Some Lacks family members raised the possibility of financial compensation, Collins says. Directly paying the family was not on the table, but he and his advisers tried to think of other ways the family could benefit, such as patenting a genetic test for cancer based on HeLa-cell mutations. They could not think of any. But they could at least reassure the family that others would not make a quick buck from their grandmother’s genome, because the US Supreme Court had this year ruled that unmodified genes could not be patented. Lacks-Whye says that the family does not want to dwell on money — and that her father has often said he “feels compensated by knowing what his mother has been doing for the world”.