ACD HeLa Genome Data Access Working Group

Background and Charge

HeLa is a human epithelial adenocarcinoma cell line that was derived from biopsy specimens of a 31-year old patient named Henrietta Lacks who was being treated for cervical cancer at The Johns Hopkins University Hospital in 1951. The specimens were obtained without her knowledge or consent. HeLa cells were the first human cells to be stably cultured for research and are the world's most commonly used human cells.

In spring 2013, a research team in Germany posted the full genome sequence of a HeLa cell line in a public database. The posting of the data triggered strong reactions from many, but most importantly from the Lacks family. The data were removed from public view. At the same time, a second HeLa genome sequence paper was under consideration for publication. In response, the NIH worked with the Lacks family to establish a process to make HeLa cell whole genome sequencing data available for biomedical research. NIH-funded researchers who sequence HeLa cell lines will be expected to deposit their data into NIH's database of Genotypes and Phenotypes (dbGaP) and requests for access to the data will be subject to a special review and approval process involving the HeLa Genome Data Access Working Group of the Advisory Committee to the Director.

CHARGE (PDF – 60KB)

The ACD HeLa Genome Data Access Working Group is charged with reviewing requests from the research community for access to HeLa cell line sequence data in dbGaP and assessing whether the requests align with the terms of use defined in the HeLa Genome Data Use Agreement. The Working Group's findings will be reported to the ACD, and the ACD will make recommendations to the NIH Director about whether a request should be approved or disapproved. The NIH Director will decide whether access to the data will be granted. As needed, the Working Group may make recommendations to the ACD on changes to the terms of use spelled out in the HeLa Genome Data Use Agreement.

Related Resources

Roster

  • Lisa A. Cooper, M.D., M.P.H., FACP (co-chair)
    Bloomberg Distinguished Professor
    James F. Fries Professor of Medicine and Director
    Johns Hopkins Center to Eliminate Cardiovascular Health Disparities
    Johns Hopkins University School of Medicine
  • Carrie D. Wolinetz, Ph.D. (co-chair)
    Associate Director for Science Policy
    National Institutes of Health
  • Russ Altman, M.D., Ph.D.
    Professor
    Bioengineering, Genetics, & Medicine
    Director
    Biomedical Informatics Training Program
    Stanford University
  • Ruth Faden, Ph.D., M.P.H.
    Philip Franklin Wagley Professor in Biomedical Ethics
    Director
    Johns Hopkins Berman Institute of Bioethics
    Bloomberg School of Public Health
    Johns Hopkins University
  • David Lacks, Jr.
    Representative
    Henrietta Lacks Family
  • Richard Myers, Ph.D.
    President
    Director and Faculty Investigator
    HudsonAlpha Institute
  • Robert Nussbaum, M.D.
    Chief Medical Officer
    Invitae Corporation
  • Veronica Spencer
    Representative
    Henrietta Lacks Family

CHAIR MEMBERS

  • Lisa A. Cooper, M.D., M.P.H., FACP
    Johns Hopkins University
  • Carrie D. Wolinetz, Ph.D.
    Associate Director for Science Policy
    National Institutes of Health

EXECUTIVE SECRETARY

  • Dina N. Paltoo, Ph.D., M.P.H.
    NIH/OD/OSP

This page last reviewed on February 12, 2011