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Case study on communicating with research ethics committees about minimizing risk through software: an application
Cason Schmit1,2, Alva O Ferdinand2, Theodoros Giannouchos1,3
1Population Informatics Lab, Texas A&M University, College Station, TX 77843, United States.
JAMIA Open
|March 1, 2024
Summary
Institutional Review Board (IRB) experts co-created language for describing privacy-enhancing software in secondary data research. This aims to improve communication and risk assessment for retrospective studies using complex software.
Area of Science:
- Health Informatics
- Bioethics
- Data Privacy
Background:
- Researchers often use complex software for retrospective secondary data analysis, seeking waivers of consent from Institutional Review Boards (IRBs).
- Little is known about IRB experts' perspectives on risk mitigation strategies involving such software.
- Effective communication between researchers and IRBs is crucial for navigating these complex studies.
Purpose of the Study:
- To co-create appropriate language for describing privacy-enhancing software to IRBs.
- To understand IRB experts' views on risks, benefits, and informational needs related to secondary data research software.
- To develop template materials for IRB applications involving privacy-enhancing software.
Main Methods:
- Two structured focus groups with IRB experts to identify key considerations.
- Development of a template IRB application and responses for studies using privacy-enhancing software.
- A three-round Delphi study with 17 experts to refine the template materials based on feedback.
Main Results:
- Focus groups generated 13 ideas on risks, benefits, and informational needs.
- Most experts agreed privacy-enhancing software minimizes risk, but inherent disclosure risks remain in secondary data studies.
- A majority (84.6%) found retrospective data-only studies with no subject contact to be minimal risk.
Conclusions:
- Disagreements exist among IRB experts regarding risk in secondary data research, potentially affecting review outcomes.
- The highest-ranked risks and benefits of privacy-enhancing software were societal (e.g., facilitating research, risk of invalid results).
- Effective communication and collaboration, incorporating privacy experts early in the design process (privacy-by-design), are essential for developing privacy-enhancing technologies.
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