The use of secondary data in research leverages the resources invested in existing datasets to advance scientific discovery and improve health outcomes through novel analyses. It also raises new and important ethical considerations for protecting the rights and interests of individuals and communities whose data are included. American Indian and Alaska Native (AI/AN) tribes that participate in research are often interested in sharing their data when doing so will help answer important questions or contribute to improved child development or population health outcomes, and when appropriate protections are in place. It is critical that researchers rely on informed practices when developing data sharing arrangements with tribes, and that IRBs and funding agencies are aware of these practices and the unique considerations that must be given to this type of research.
The speaker panel for this webinar will comprise investigators and representatives from the Strong Heart Study, the AI/AN Head Start Family and Child Experiences Survey (AI/AN FACES), and the Safe Passage Study. Speakers will discuss their experience operationalizing data sharing agreements with their community partners and study participants. The discussion will highlight the risks and benefits of data sharing and present examples of informed practices for approaching such arrangements. The following topics will be discussed:
October 26, 2017 1:00 PM Eastern
1 hour, 30 minutes