Notice Number: NOT-OD-13-099

Update: The following update relating to this announcement has been issued:

• May 24, 2024 - Update to HeLa Cell Whole Genome Sequence Data Submission and Access Under the NIH Lacks-Family Agreement. See Notice NOT-OD-24-098
• April 16, 2014 - Notice to clarify that NIH-funded investigators who have generated and submitted HeLa cell whole genome DNA or RNA sequence data to dbGaP must submit a data access request if they plan to use these data in any analyses. See Notice NOT-OD-14-080.
• September 27, 2013 - See Notice NOT-OD-13-119. Request for Information: Input on the Draft NIH Genomic Data Sharing Policy.

Key Dates
Release Date: August 14, 2013

Issued by
National Institutes of Health (NIH)

Purpose

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 Guidance on Sharing HeLa Cell Whole Genome Sequence Data

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 Guidance on Family Acknowledgement

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.

Inquiries

Please direct all inquiries to:

Office of Science Policy
Email: [email protected]
Telephone: 301-496-9838
http://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/study.cgi?study_id=phs000640.v1.p1