The US National Institutes of Health and the family of Henrietta Lacks have come to an agreement to allow researchers controlled access to whole-genome data from the HeLa cell lines that were derived from cells from Lacks' cancer without her knowledge or consent.
After the publication of a HeLa genome in March, family members raised concerns that public access to the HeLa genome could have privacy consequences for them. The authors of that paper quickly removed the data from public view.
Under this new policy, set forth in a comment to Nature, researchers wishing to use HeLa whole-genome data must apply for access to that dataset as well as new one generated by University of Washington researchers, which are being housed in dbGaP. A new working group, comprised of scientists, physicians, a bioethicist, and two members of the Lacks family, will oversee access to the HeLa data.
"We are pro scientist. We want to continue to the legacy of Henrietta," David Lacks, Jr., Lacks' grandson said at an NIH briefing, according to the Wall Street Journal. "We just wanted to add an extra step to protect our privacy."
Users must agree to abide by the terms of the data use agreement, including depositing future whole-genome sequence data generated from HeLa cells into the controlled-access database, as well as acknowledging contribution of Lacks and her family in their papers and presentations containing HeLa data.
GenomeWeb Daily News has more on the policy here.