Chapter 1. Introduction (Emily E. Anderson).- Part 1. History, Codes of Ethics, Regulations.- Chapter 2. Theoretical roots of stakeholder-engaged research and reflections on CBPR and PCOR as a response to past research abuses (Meredith Minkler).- Chapter 3. A philosophical justification for stakeholder engagement and key principles/a conceptual model for ethical stakeholder-engaged research (Emily E. Anderson).- Chapter 4. Epistemology and stakeholder engagement/impact of diversity on ethical standards and practices (Kevin C. Elliott).- Chapter 5. The limitations of the Belmont principles for stakeholder-engaged research (Elisa Hurley).- Chapter 6. Canada’s approach to regulating research with indigenous peoples (Kim Anderson).- Chapter 7. The Council for International Organizations of Medical Sciences (CIOMS) Ethical Guidelines and Stakeholder Engagement (Alex John London).- Chapter 8. History and philosophy of patient engagement in clinical research (Robert M. Califf).- Part 2. Promoting Equitable Collaboration.- Chapter 9. Who represents the community? Diversity and inclusion (Ann-Gel Palermo).- Chapter 10. Engagement for equity and sustainability; developing an equitable partnership; power-sharing, accountability, communication, conflict resolution, and trust (Giselle Corbie-Smith).- Chapter 11.- Capacity building and benefits to communities; Credit and compensation for community and patient stakeholders (Elizabeth Ripley).- Chapter 12. Engaging communities in agenda setting: deciding what questions get asked and how (Alice Ammerman).- Chapter 13. Conflicts of interest in research that engages stakeholders [individual and organizational] (Susannah Rose).- Part 3. Stakeholder Voices.- Chapter 14. “Crossing over” or “between two worlds” – The story of a someone whose engagement in research motivated them to get formal training in research or research ethics (Gigi McMillan).- Chapter 15. A community IRB member/member of a community-based ethics review board (Bronx Community Research Review Board).- Chapter 16. A stakeholder who has served as a PI (Sharon Terry).- Chapter 17. A stakeholder who has served as a community advisory board member (Sandra Crouse Quinn).- Chapter 18. The challenges of working in your own community.- Chapter 19. A patient advocate’s experience engaging in research.- Part 4. Human Research Protections and Research Ethics Review.- Chapter 20. Stakeholder engaged research and (the limits of) IRB review (Jennifer Cross).- Chapter 21. Community-level risks and benefits (Lainie Ross).- chapter 22. The principle of respect for community - a new principle (Nancy Shore).- Chapter 23. Challenges in the field and in interactions with research participants; challenges to voluntary informed consent, privacy, and confidentiality; Moral distress among lay stakeholders (Maghbooba Mosavel).- Chapter 24. The notion of community consent (Charles Weijer).- Chapter 25. Community-based research review processes (Hal Strelnick).- Chapter 26.Data ownership and deciding what gets published (Melody Goodman).- Part 5. Case Studies: Ethics of Stakeholder-Engaged Research Across Settings.- Chapter 27. Research in emergency settings: public notification and consultation (Ryan Spellecy).- Chapter 28. Engaging stakeholders in genomics research and the governance of biobanks (Michelle McGowan).- Chapter 29. Engaging online patient communities in research (Elizabeth Buchanan).- Chapter 30. Engaging patient advocates in research (Deborah Collyar).- Chapter 31. Engaging rare disease communities (Laura P. Forsythe).- Chapter 32. Engaging stakeholders in basic science research (Rhonda Kost).- Chapter 33. Engaging indigenous communities/ American Indian communities in Research (Bonnie Duran).- Chapter 34. North Americans engaging internationally (Amy Corneli).- Chapter 35. Engaging stakeholders in environmental health research (Doug Brugge).- Chapter 36. Engaging stakeholders in research on stigmatized health conditions (e.g., mental health, addiction, HIV) (Dennis Watson).- Chapter 37. Engaging youth in research (Celia Fisher).
