Of the six data access requests, the HeLa Genome Data Access Working Group accepted one initially, three more after additional data was requested, and for two other projects the working group is looking for additional information.
The announcement of the projects and the group’s approvals -- which included consultation with descendants of Henrietta Lacks, the woman whose fatal cervical tumour cells brought about the cell line – follows long negotiations between the US agency and the Lacks family.
The approved projects include:
- Use of Haplotype Resolved HeLa Genome Sequence to Map Ribo-seq Reads for Inference of Allele-specific mRNA Translation Rates;
- The Role of Cohesin and the Cohesin Loading Factor NIPBL in Transcriptional Regulation of HeLa Cells;
- Computations Methods for Integrative Analysis of Omics Datasets; and
- Cancer Haplomics: Computation of Haplotypes in the Presence of Polyploidy and Variable Copy Number.
The working group is looking to ensure that the proposed research is medically driven, not related to determining the ancestry or population origins of the cells or reliant on contacting the Lacks family, includes any plans to develop intellectual property or commercial products based on the findings, and that the research findings will be published or presented.
Publications that use the HeLa genomic data also must include the 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.”