Blog Summary: Ethical Concerns and Challenges in Research using Secondary Data

Digital data is a strategic asset for business. It is also an asset for researchers seeking to answer socially beneficial questions using company held data. Research using secondary data introduces new challenges and ethical concerns for research administrators and research ethics committees, like IRBs. 

FPF Senior Researcher, AI & Ethics, Dr. Sara Jordan, analyzes some of these concerns in the post Research Using Secondary Data: New Challenges and Novel Resources for Ethical Governance published on Ampersand: The PRIM&R Blog. 

In the informative analysis, Dr. Jordan examines five key points:

• How can Research Administrators and IRB Members Understand and Manage Risks and Benefits: With the multitude of available secondary research data sources, what can be done to better understand and manage the risks and benefits that are presented with its usage?  
• IRBs, Exemption 4, and Secondary Data Uses: The 2018 Common Rule revision included the expansion of categories that could be deemed as “exempt from review”. With this new revision came the introduction of associated challenges, such as reviewing research data for identifiable information. 
• Determining if Secondary Data is “Publicly Available”: Lack of a distinction in the definition of “public” poses a challenge to research administrators. 
• De-identification, Re-identification, and the Pursuit of Anonymization: Often, research administrators and IRBs will be handed the responsibility of educating researchers on ways to de-identify data and manage the reidentification risks that their uses of data present. 
• Getting Research Teams the Review they Need: Review structures with the resources and remit to review secondary uses of data are limited. FPF will soon launch the Ethical Data Use Committee (EDUC), a multi-expert review committee that offers recommendations to researchers and other organizations seeking to manage risks associated with secondary uses of data. 

Public Responsibility in Medicine and Research (PRIM&R)’s blog Ampersand is a discussion space for thoughtful conversations on research ethics and oversight. Learn more here.