Envisioning Ethical Frameworks for Community-Data

Emerging funder and journal requirements for research data management impact community-engaged research. In Canada, the Tri-Agency’s RDM Policy prompted changes to their Policy Statement on Ethical Conduct for Research Involving Humans, enabling “broad consent” for data sharing. Across the border, the National Institutes of Health and National Science Foundation are enacting new protocols for data management and sharing.

While sensitive data management is an active discussion in academic circles, researched communities are not yet included. Community organizations collect and manage data and often act as intermediaries in human-participant research that produces sensitive data but do so in different ways than university researchers. These groups and their constituents stand to benefit from guidelines to help alleviate over-research, surveillance, and damage-centered narratives.

Our IASSIST presentation will discuss insights and strategies gained from the RDM Community Data Toolkits Workshop on March 21-22, 2024. This two-day event will bring together researchers and information specialists alongside social justice organizations and non-profits to develop toolkits to better navigate the critical ethics of community research data. Discussions will ensure:

• Data can be utilized by communities themselves in ways that serve their specific targets and metrics for change as conceived by their own determinants of need and designs for betterment. Community-led data practices empower and support community-led grassroots actions and initiatives. • Research data from communities is protected and does not make them vulnerable and/or grant them visibility, safeguarding their susceptibility to data misuse and exploitation.

With the community-engaged interventions we hope to establish a framework to continue working on these toolkits beyond the workshop. By sharing these insights with the IASSIST community, we hope to assist researchers and information specialists who may also be working with community data and/or organizations, as well as find potential collaborators on future projects following this theme