A US National Institutes of Health (NIH) committee approved the first uses of genomic data from the HeLa cell line on 16 September. The HeLa Genome Data Access Working Group includes representatives of the family of Henrietta Lacks, the African American woman whose fatal cervical tumour gave rise to the HeLa cell line in 1951.
The announcement follows several months of negotiations between Lacks family members and NIH leadership, including director Francis Collins. The talks resulted in an agreement in which researchers must seek permission to use HeLa genome data generated by independent teams at the University of Washington in Seattle and the European Molecular Biology Lab in Heidelberg, Germany (see ‘Deal done over HeLa cell line‘).
The working group received six requests; it recommended four for approval and sought further information on the other two. Intellectual-property rights figured prominently in the decisions. The working group asks researchers to disclose any plans to develop intellectual property or commercial products from the HeLa genome data. Scientists must also agree to use the data only for biomedical research (ancestry and population research are off limits). Scientists are also barred from contacting members of the Lacks family, though they can seek additional detail via the working group.
Publications that use the HeLa data must also include an acknowledgement: “Henrietta Lacks, and the HeLa cell line that was established from her tumor cells without her knowledge or consent in 1951, have made significant contributions to scientific progress and advances in human health. We are grateful to Henrietta Lacks, now deceased, and to her surviving family members for their contributions to biomedical research.”
David Lacks Jr., a grandson of Henrietta Lacks who is serving on the working group, told Nature last month that he was looking forward to finally having a say in how his grandmother’s cells are used by researchers. “The HeLa cell has done so much for the world. We’re hoping that the genome sequence will do equally as much for the world,” he said in the interview.
For more Nature News coverage of the HeLa deal:
‘NIH Director explains HeLa agreement‘
07 August 2013
‘HeLa publication brews bioethical storm‘
27 March 2013
‘Most popular cell line in science gets sequenced‘
15 March 2013