A framework for ethical governance of mental health databanks

Wellcome has commissioned a series of projects to explore global mental health datasets (a collection of data from a single source or for a single purpose) and databanks (large aggregations of data from many datasets).

This critical analysis framework supports the management of ethical risks arising from the creation, enrichment and aggregation of potentially sensitive datasets.

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Who the framework is designed for 

We developed this framework to guide teams building a databank through key ethical considerations associated with building and running a databank. We provide a library of mitigation strategies for teams to consider implementing to address these considerations.

It is openly available on a CC-BY 4.0 license (credit: Wellcome), for anyone to use, share and adapt it. 

While not compulsory, teams may find this framework useful when writing grant applications for Wellcome or other funding organisations.

Others who may also find this framework useful

  • Funders, governments, and civil society/non-governmental organisations might use or build from this framework to guide the evaluation of proposals for data collection, enrichment, aggregation and/or use.
  • Research institutions and individual researchers could use this framework to extend the conceptualisation, planning, and execution of their work towards more equitable and community-centring outcomes.
  • Communities and people with lived experience are invited to use and adapt this framework to meet their needs as they evaluate opportunities for engaging with the research ecosystem.

What’s included in the framework 

The framework takes readers through two phases: developing a databank and using a databank. Each phase explores a variety of risks and mitigations within each area, adding specific points where lived experience and community participation provide mutual benefit. On this page you can explore the key questions. For examples of mitigations, please download the full document.

Phase 1 – Developing a databank 

Phase 2 – Using the databank 

Download the framework 

To learn more about the risks and how to mitigate them, download the full framework:

About this framework 

Wellcome worked in partnership to create this guidance:

  • Aapti Institute a public research organisation that works at the intersection of technology and society. With a keen focus on data governance and rights from a community-centric lens, Aapti explores stakeholder-wide pathways to responsibly unlock the societal value of data.
  • Sage Bionetworks – a non-profit health research organisation focused on the translation of science into medicine.

Wellcome's lived experience advisers and external subject matter experts reviewed the framework, ensuring that critical nuance was not lost through the synthesis process.

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