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 – 154KB)

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

HeLa Data Access Request Approval Process

The ACD HeLa Genome Data Access Working Group meets every two months to review requests. To ensure your request is reviewed by the working group prior to the ACD meeting, all requests must be submitted one week before the working group's meeting. Upcoming dates for the working group meetings are below.

Requests for access should follow the "Special Instructions for Preparing a Research Use Statement for Requesting Access to HeLa Cell Genome Sequence Data in dbGaP" (PDF – 82KB) and submitted to the dbGaP Authorized Access Portal for evaluation and review.

HeLa Genome Data Access Working Group Meeting Dates:
All requests must be submitted one week before the meeting.

  • September 5, 2024 — Submit request by August 29, 2024
  • November 7, 2024 — Submit request by October 31, 2024
  • January 2, 2025 — Submit request by December 26, 2024
  • March 6, 2025 — Submit request by February 27, 2025
  • May 1, 2025 — Submit request by April 24, 2025
  • July 3, 2025 — Submit request by June 26, 2025

Roster

  • Russ B. Altman, M.D., Ph.D.
    Professor, Bioengineering, Genetics, and Medicine
    Director, Biomedical Informatics Training Program
    Stanford University
    Stanford, CA
  • Ruth Faden, Ph.D., M.P.H.
    Philip Franklin Wagley Professor in Biomedical Ethics
    Director, Johns Hopkins Berman Institute of Bioethics
    Johns Hopkins University
    Baltimore, MD
  • David Lacks, Jr.
    Representative, Henrietta Lacks Family
    Baltimore, MD
  • Jeri Lacks-Whye
    Representative, Henrietta Lacks Family
    Baltimore, MD
  • Richard M. Myers, Ph.D.
    President, Director and Faculty Investigator
    HudsonAlpha Institute for Biotechnology
    Huntsville, AL
  • Veronica Robinson
    Representative, Henrietta Lacks Family
    Baltimore, MD

CO-CHAIRS

  • Garth Graham, M.D., M.P.H.
    Director and Global Head of Healthcare and Public Health
    Google/YouTube
    San Bruno, CA
  • Lyric Jorgenson, Ph.D.
    Associate Director for Science Policy
    Director of the Office of Science Policy
    National Institutes of Health
    Bethesda, MD

EXECUTIVE SECRETARY

  • Cheryl Jacobs, Ph.D.
    Division of Scientific Data Sharing Policy
    Office of Science Policy
    National Institutes of Health
    Besthesda, MD

This page last reviewed on May 24, 2023