Notice Number: NOT-OD-13-099
Update: The following update relating to this announcement has been issued:
Release Date: August 14, 2013
National Institutes of Health (NIH)
The purpose of this Guide Notice is to provide guidance on the use of HeLa Cell Whole Genome Sequence Data and encourage researchers to acknowledge Henrietta Lacks and her surviving family members for the significant contributions that she and the HeLa cell line have made to scientific research and advances in human health.
NIH strongly encourages all grantees, contractors, and NIH researchers proposing to generate HeLa cell whole genome sequence data to include a plan for submission of these data to the database of Genotypes and Phenotypes (dbGaP) as part of the "Research Sharing Plan" provided with each application. The plan should include provisions for the data to be added to the dbGaP study page for HeLa Cell Genome Sequencing Studies, and an acknowledgement that the researcher has read and will agree to the provisions of the HeLa Genome Data Use Agreement (available at http://dbgap.ncbi.nlm.nih.gov/aa/wga.cgi?view_pdf&stacc=phs000640.v1.p1). Researchers who wish to access HeLa whole genome sequence data can submit a data access request through the HeLa dbGaP study page (available at http://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/study.cgi?study_id=phs000640.v1.p1).
NIH also encourages grantees who have used or generated HeLa whole genome sequence data that is under controlled access in dbGaP to acknowledge Henrietta Lacks and her family by using this sample language (or something similar) in their publications, presentations, or other public reporting of research using these genomic data:
“The genome sequence described/used in this research was derived from a HeLa cell line. 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. This study was reviewed by the NIH HeLa Genome Data Access Working Group (http://acd.od.nih.gov/hlgda.htm). The genomic datasets used for analysis described in this manuscript were obtained from the database of Genotypes and Phenotypes (dbGaP) through dbGaP accession number phs000640.v1.p1.”
Please direct all inquiries to:
Office of Science Policy