Yes, No, Maybe?: Legal & Ethical Considerations on Informed Consent in Data Sharing and Integration

Summary

This session, based off of AISP’s brief, Yes, No, Maybe? Legal & Ethical Considerations for Informed Consent in Data Sharing and Integration will explore the legal, ethical and practical challenges of consent in data sharing and integration. This session will outline the role of consent within major federal laws governing the sharing of administrative data, including individually identifiable information; and examine important ethical implications of consent, particularly in cases when the law is silent or unclear. Finally, this presentation will lift up the foundational role of strong governance and consent frameworks in ensuring ethical data use and offer technical alternatives to consent that may be appropriate for certain data uses.

 

PRESENTERS

Amy Hawn Nelson
Research Faculty, Director of Training and Technical Assistance
Actionable Intelligence for Social Policy (AISP)

Deja D. Kemp, JD
Director of Legal Policy,
Actionable Intelligence for Social Policy (AISP)

 

RESOURCES

• Yes, No, Maybe Workshop Slides (PDF)
• AISP’s brief, Yes, No, Maybe? Legal & Ethical Considerations for Informed Consent in Data Sharing and Integration
• Four Questions to Guide Decision-Making for Data Sharing and Integration