About
Member Programs
- Cancer Genome Projects
  - North America
    - WC-CPMP
    - PACA-CA
    - BC-POGP
    - P-1000
  - Europe
  - Asia
    - KMM-PMP
    - LUCA-KR
    - KOREA RARE
    - GMAC Japan
    - CGCC
    - GPGC
    - HKBM
    - SCRUM-MONSTAR
  - Middle East
    - PTC-SA
  - United Kingdom
    - PBCP
    - PPCG
    - PP UK
    - OCCAMS-GB
Policies & Guidelines
News & Events
Patient Engagement
- Patient Engagement Overview
- Resources for Patients

E.3 Publication Policy

Policies & Guidelines

E.3 Publication Policy

Version 1.2 May 2023

The ICGC has pioneered international data sharing through its policies and practices and therefore follows the Global Alliance for Genomics and Health (GA4GH) belief that members should be encouraged to share data as widely as is possible and will work with programs to maximize data sharing to the greatest extent possible within accepted legal, ethical and governance boundaries.

POLICY: ICGC ARGO member programs will have privileged access to data from other members of the Consortium based on their level of Membership. Data access is tiered and aimed not to disadvantage Members or Associate Member Data producers, with a framework that encourages data sharing, yet provides data generators with sufficient time to perform analyses. Embargo periods are as follows:

Up to 12 months from completion of standardized analyses: Access to Program submitting data only
12 months: Access to Members
18 months: Access to Associate Members
24 months: Accessible by external parties (public)

E3.1.1 Guidelines regarding Embargo periods and Data Release

At the time molecular and clinical data are deemed complete (see E.5 Quality Standards of Samples and Clinical Data), the embargo period formally starts.
In certain circumstances (such as within regulatory clinical trials or blinded studies) programs may wish to release partially complete clinical data. At the time of partial data release the embargo period formally commences
Should new or updated data (clinical or molecular) be added, the embargo clock is not reset, and the original starting time remains.
Data released to the public is final, meaning data publicly released is not able to be withdrawn and new embargo periods placed.
Member programs are entitled, at their discretion, to waive the data access periods if they so wish. The details of this would be made available through the ICGC ARGO website.
Data from ICGC 25k where data has been re-purposed for ARGO (known as legacy data) is not subject to an embargo period and both molecular and clinical data will be publicly released with no delay. This is on the basis that legacy data has either been published in a prior manuscript or sufficient time has been provided for data producers to analyze and publish, and data producers agree to impose no restrictions on these legacy data sets.

Following the 24 month member privilege period (embargo) investigators outside of the ICGC are free to use data generated by ICGC ARGO members, either en masse or specific subsets, but are asked to follow the guidelines developed at the Ft. Lauderdale meeting [1], and specific guidelines developed by the ICGC, as per below.

POLICY: Users of Consortium data, whether members of the Consortium or not, should be aware of the publication status of the data they use and treat them accordingly. For example, all investigators, including other Consortium members, should obtain the consent of the data producers before using unpublished data in their individual publications, and the data producers should not unreasonably withhold this consent.

Specifically, data users should cite the source of the data and should acknowledge the clinical contributors and the data producers from the ICGC. All members should enforce a high standard of respect for the scientific contribution of the data producers.

This description of the ICGC data release policy is directed primarily at issues concerning the use of Consortium data in scientific publications. The intent of the policy is to accelerate the use of the data by the global scientific community while, at the same time, allowing the data producers to get appropriate scientific credit for their work through publications. To facilitate this goal, the data producers agree not to restrict the use of the data by others, while the data users are encouraged to act in a manner that is consistent with this policy providing unrestricted access to pre-publication data.

This policy will remain under review to reflect the continually evolving fields of genomics, bioinformatics, and to comply with ethics and privacy policies and regulations.

https://www.genome.gov/Pages/Research/WellcomeReport0303.pdf.

Copy url