Data Sharing in Research with American Indians and Alaska Natives:
Informed Practices, Considerations, and Case Studies

Data Sharing in Research with American Indians and Alaska Natives

Informed Practices, Considerations, and Case Studies

Online

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:

  • Conducting conversations about data sharing early in the research process
  • Informed consent and consent for secondary use of data and biospecimens
  • Ownership and de-identification of data
  • Restricted use data sets and criteria for gaining access
  • Data access committees
  • Considerations for children's data
  • Considerations for multisite research
  • Sharing research results with tribal stakeholders
  • Collaborating with tribal research review and regulatory systems
  • Building capacity for future research

What will I learn?

By attending this webinar, attendees will learn the following as it pertains to research with AI/AN individuals and communities:

  • The fundamental risks and benefits of data sharing and its implications
  • Strategies for operationalizing data sharing arrangements through examples of informed practices and viewing sample agreements
  • Specific considerations for genetic data sharing and sharing of children's data

Who should attend?

This webinar will benefit IRB professionals, IRB members, tribal research oversight entities, funding agencies, and researchers who conduct research with AI/AN individuals and communities.

Collaborator

PRIM&R is delighted to collaborate with the National Congress of American Indians (NCAI) Policy Research Center to present this webinar. The NCAI Policy Research Center was established by NCAI in 2003, and its mission is to provide tribal leaders with the best available knowledge to make strategically proactive policy decisions in a framework of Native wisdom that positively impact the future of Native peoples. The NCAI, established in 1944, is the oldest, largest and most representative American Indian and Alaska Native organization serving the broad interests of tribal governments and

Continuing Education

Webinar participants holding the Certified IRB Professional (CIP®) credential may apply 1.5 continuing education credits towards CIP recertification.

Speakers

Jyoti Angal, MPH, CIP

Jyoti Angal, MPH, CIP

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Deana Around Him, DrPH, ScM

Deana Around Him, DrPH, ScM

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Amy Elliott, PhD

Amy Elliott, PhD

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Lizabeth Malone, PhD

Lizabeth Malone, PhD

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Marcia O’Leary, RN

Marcia O’Leary, RN

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Additional Resources

A collection of relevant background reading, further reading, links, templates, checklists, and/or charts accompany each PRIM&R webinar. Groups that register for webinars receive a discussion guide containing thought-provoking questions and facilitation tips that may help in using the webinar as an educational tool for IRBs.

Background Reading:

Arias, J.A., Pham-Kanter, G., Gonzales, R., Campbell, E.G. (2016). Trust, vulnerable populations, and genetic data sharing. Journal of Law and the Biosciences, 2, pp. 747-753. doi:0.1093/jlb/lsv044