This book provides in-depth analyses of a wide range of topics surrounding ethical issues in community and patient stakeholderengaged health research, and highlights where consensus exists, is emerging, or remains elusive. Topics in this book cover the history of stakeholder engagement in health research; how codes of ethics and regulations have (or have not) addressed stakeholder engagement; how to promote equitable collaboration; the ethical perspectives of different stakeholders; and the unique challenges posed by stakeholder- engaged research to the protection of human research participants and the research ethics review process. The book includes discussion of unique issues that arise in stakeholder engagement relevant to different populations, settings, and research designs. This book is relevant for anyone with a role or interest in stakeholder-engaged research, including patient and community research partners; academic researchers; research ethics scholars and educators; and funders.
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.
Canadas 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
advocates 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).
Emily E. Anderson, PhD, MPH, is Professor in the Neiswanger Institute for Bioethics and Healthcare Leadership at Loyola University Chicagos Stritch School of Medicine. Dr. Anderson holds a PhD in health care ethics from Saint Louis University and an MPH from University of Illinois Chicago. She teaches courses on research ethics and responsible conduct of research to bioethics and biomedical sciences graduate students as well as medical students. In addition to the ethics of stakeholder engagement in research, her areas of interest and expertise include researcher and physician professionalism and misconduct; ethical issues in research with vulnerable populations; informed consent; institutional review board (IRB) policy; and the application of qualitative research techniques to the study of research ethics. She has published over 50 articles in top journals including the American Journal of Bioethics, Journal of Law, Medicine, and Ethics, Academic Medicine, and IRB: Ethics & Human Research. Dr. Anderson currently serves as associate editor of Narrative Inquiry in Bioethics. Dr. Anderson has been a co-investigator on several federally-funded research and educational projects and recently co-authored the book 100 Questions and Answers about Research Ethics (Sage Publications, 2018) with Dr. Amy Corneli (at Duke University).
