H3ABioNet provides guidelines on data management and governance

    Data Governance

    What is Data Governance?

    Data governance is about determining and formalising a framework for how to organise and control data.  In genomic research this is highly important and impacts almost all areas of decision making when setting up and running a study.

    Ethical data use and good data governance is one of H3ABioNet’s core principles, and over the years, the network has gained much experience in this regard. Useful outputs developed include:

    1. Data Governance Index Card Presentation - Nicola Tiffin
    2. Framework for Data Governance and Ethical Data Use - Nicola Tiffin
    3. Data governance guidelines

    Some questions that would be addressed when thinking about good data governance would be:
    • What legislation is in place that impacts my research data?
    • Would I be happy with the way my data is managed as a study participant?
    • How do I keep the data safe?
    • What computing infrastructure do I need?
    • How should I build a clinical database?
    • How should my data be stored and for how long?
    • How should I standardise my data?
    • How do I optimise my research output?
    • What measures do I need to put in place to ensure high data quality?
    • How can I make my data FAIR?
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