Stanley Center Commitment to Genotypic Data Sharing

It is now feasible to discover the complete genetic architecture of serious mental illness worldwide by systematic and collaborative sample collection and phenotyping. The goal of the Stanley Center is to catalyze these activities and to ensure that the genotypic and phenotypic data and associated methods necessary to make progress against mental illness are globally available to investigators.

Based on these goals, we have formulated the following principles for collaboration. We encourage other research groups to adopt similar principles. The Stanley Center will not enter into collaborations without a commitment from all parties to full sharing of the genotypic and phenotypic data generated as a result of the collaboration.

Principles:

  1.  All collaborations must include data sharing to the fullest extent permitted under applicable laws and regulations. All genotypic and phenotypic data that we produce based on any samples we receive from collaborators (a) will be shared rapidly with those collaborators, and (b) will be automatically contributed for meta-analysis (e.g., to the Psychiatric Genomics Consortium [PGC]) to advance global genetic discovery efforts. Summary variant frequency and association statistics (NOT individual-level data) will be made publicly available in order to maximize the value of these efforts to the research and clinical communities.
     
  2. Genetic data (i.e., genotyping and sequencing results) will also be submitted, as permitted by informed consents and local laws and regulations, to appropriate controlled-access databases such as dbGaP or EGA. Stanley Center collaborations therefore require that human subjects are appropriately consented and subject samples are collected in such a way as make such genotypic and phenotypic data sharing possible. Therefore, groups wishing to collaborate with the Stanley Center should first:
     
    1. Ensure the willingness of the research group to have their genotypic and phenotypic data submitted automatically for meta-analysis and to appropriate databases. 
       
    2. Work with their IRB or Ethics Committee to determine if the informed consent forms under which this material was obtained permit broad sharing of genomic data. 
       
    3. For samples collected in the US after 1/25/15, we strongly encourage adoption of the NIH’s Genomic Data Sharing Policy, including required language in the informed consent. 

For reasons of uniformity and cost, we prefer to receive samples at the Stanley Center, but will, on occasion, consider supporting genotyping outside the United States after careful evaluation of design, quality, and cost. All DNA sequencing will be conducted at the Broad Institute. Transfer of samples from the country of the collaborators to the United States, therefore, must be permitted under and comply with all applicable laws and regulations and be logistically feasible.