• Posted: February 18, 2016

Consent Codes

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About This Work Product

Restrictions on data use may be necessary in order to respect the consent of research participants and patients. As members of the Global Alliance for Genomics and Health (Global Alliance), we examined the variation in data use conditions that are based on consent provisions for genomics datasets in research and clinical settings based on the following: (1) a review of guidance from the National Institutes of Health; (2) a survey of data use conditions for data accessed within a large research institute, the Broad Institute of MIT and Harvard, and for data held within the European Genome-phenome Archive (EGA) of the European Bioinformatics Institute (EMBL-EBI) and Centre for Genomic Regulation (CRG); and (3) consultation with the international scientific community via the Global Alliance Data Working Group and with the Matchmaker Exchange Project. Based on our study, we propose a structure for recording data use “categories” and “requirements” with a view to support maximum data use and integration.

Work Product Details

Working Group(s):

Regulatory and Ethics

Work Product Type:


Related Initiative(s):


Related Work Product(s):


  • access
  • Consent
  • Data Sharing
  • automated access




Consent Codes

Data Use Categories and Requirements (Consent Codes)

Consent Codes
Name Abbreviation Description
Primary Categories (Iry)
no restrictions NRES No restrictions on data use.
general research use and clinical care GRU(CC) For health/medical/biomedical purposes and other biological research, including the study of population origins or ancestry.
health/medical/biomedical research and clinical care HMB(CC) Use of the data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry.
disease-specific research and clinical care DS-[XX](CC) Use of the data must be related to [disease].
population origins/ancestry research POA Use of the data is limited to the study of population origins or ancestry.
Secondary Categories (IIry) (can be one or more extra conditions, in addition to Iry category)
other research-specific restrictions RS-[XX] Use of the data is limited to studies of [research type] (e.g., pediatric research).
research use only RUO Use of data is limited to research purposes (e.g., does not include its use in clinical care).
no “general methods” research NMDS Use of the data includes methods development research (e.g., development of software or algorithms) ONLY within the bounds of other data use limitations.
genetic studies only GSO Use of the data is limited to genetic studies only (i.e., no research using only the phenotype data).
not-for-profit use only NPU Use of the data is limited to not-for-profit organizations.
publication required PUB Requestor agrees to make results of studies using the data available to the larger scientific community.
collaboration required COL-[XXX] Requestor must agree to collaboration with the primary study investigator(s).
return data to database/resource RTN Requestor must return derived/enriched data to the database/resource.
ethics approval required IRB Requestor must provide documentation of local IRB/REC approval.
geographical restrictions GS-[XXX] Use of the data is limited to within [geographic region].
publication moratorium/embargo MOR-[XXX] Requestor agrees not to publish results of studies until [date].
time limits on use TS-[XXX] Use of data is approved for [x months].
user-specific restrictions US Use of data is limited to use by approved users.
project-specific restrictions PS Use of data is limited to use within an approved project.
institution-specific restrictions IS Use of data is limited to use within an approved institution.

SOM Dyke, et al. Consent Codes: Upholding Standard Data Use Conditions. PLoS Genetics. 12(1): e1005772.

Contact: Dr. Stephanie Dyke (stephanie.dyke@mcgill.ca)