IJPDS International Journal of Population Data Science

The Four Questions - Is this legal? Is this ethical? Is this a good idea? How do we know (and who decides)? should be considered within an established data governance framework and alongside core partners to determine whether and how to move forward when building an Integrated Data System (IDS) and also at each stage of a specific data project.

A new Four Question Framework, developed by researchers from the University of Pennsylvania and published in the International Journal of Population Data Science (IJPDS), provides a simple, accessible method for data partners to carefully consider the development of shared data infrastructure and proposed data integration projects. This process is iterative and as relational as it is technical, which means authentic collaboration across partners should be priority throughout each stage of a data use project.

In this newly published article, the authors share their Four Question Framework to guide data integration partners in building a strong governance and legal foundation to support ethical data use. While this framework was created based on work in the United States, it is meant to be a simple, digestible tool that can be adapted to any context.

The framework was developed through a series of public deliberation workgroups and 15 years of field experience working with a diversity of data integration efforts, and consists of the following Four Questions:

1. Is this legal? While the legality of data sharing and integration is complex and specific to local context, it largely comes down to gaining clarity on two concepts: 1) legal authority, and 2) permissible data access parameters.
2. Is this ethical? Ethics considers what is good for individuals, communities, and society at large. Ethical data use must ensure that individual-level data are protected and not used for harm. At the same time, it is also ethical to make data available when it can provide actionable intelligence to benefit society.
3. Is this a good idea? In some instances, reusing administrative data may be both legal and ethical but still not feasible or a good idea in the current moment. Data availability, resources, and the potential for meaningfully acting upon insights from the data should also be carefully considered in the data governance process to ensure data sharing is practical and worthwhile in a specific context.  
4. How do we know (and who decides)? The three previous questions are all answered through data governance. Strong and inclusive data governance practices are how we know if data sharing and integration is legal, ethical, and a good idea.

Amy Hawn Nelson adds that “Data moves at the speed of trust, and these four questions are essential for trust building. We discuss these questions in depth, with a particular focus on the role of governance in establishing legal and ethical data use, and provide example data governance structures from two IDS sites and hypothetical scenarios that illustrate key considerations for the Four Question Framework.”

 

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Amy Hawn Nelson PhD and Sharon Zanti MSW, Actionable Intelligence for Social Policy, University of Pennsylvania

Hawn Nelson, A. and Zanti, S. (2023) “Four Questions to Guide Decision-Making for Data Sharing and Integration”, International Journal of Population Data Science, 8(4). doi: 10.23889/ijpds.v8i4.2159.