Ethics in Community Engaged Research and Working with Institutional Review Boards (IRBs)

August 28, 2013
  • Anderson, E. E. (2013). Participant protections and research integrity: A pilot focus group study. Journal of Empirical Research on Human Research Ethics, 8(1), 20-31.

    • This pilot focus group study explores the views of academic partners and community partners regarding challenges to the protection of research participants and research integrity in community-engaged research (CEnR). The findings presented have implications for the development of research ethics training materials for academic-community research partnerships and IRBs; best practices for CEnR; and future research on ethical issues in CEnR.
  • Anderson, E. E., Solomon, S., Heitman, E., DuBois, J., Fisher, C. B., Kost, R. G.,…Ross, L. F. (2012). Research ethics education for community-engaged research: A review and research agenda. Journal of Empirical Research on Human Research Ethics, 7(2), 3-19.

    • The authors—a group of representatives of CTSA-funded institutions and others who share expertise in research ethics and community-engaged research (CEnR)—have identified gaps in the literature regarding (1) ethical issues unique to CEnR; (2) the particular instructional needs of academic investigators, community research partners, and IRB members; and (3) best practices for teaching research ethics. This paper presents what we know, and what we still need to learn, in order to develop quality research ethics educational materials tailed to the full range of stakeholder groups in CEnR.
  • Campbell-Page, R. M., & Shaw-Ridley, M. (2013). Managing ethical dilemmas in community-based participatory research with vulnerable populations. Health Promotion Practice, 14(4), 485-490.
    • In this article, researchers describe ethical dilemmas encountered by their research team during a CBPR study with undocumented immigrants in Toronto, Canada. They address the problems the research team faced, the processes by which they sought to understand the problems, how solutions were found, and how the ethical dilemmas were resolved. The lessons outlined in this article may assist others in overcoming ethical dilemmas encountered while doing research with vulnerable communities.
  • Davison, C. M., Kahwa, E., Edwards, N., Atkinson, U., Hepburn-Brown, C., Aiken, J., P.,…MacFarlane, D. (2013). Ethical challenges and opportunities for nurses in HIV and AIDS community-based participatory research in Jamaica. Journal of Empirical Research on Human Research Ethics, 8(1), 55-67.

    • This paper outlines some ethical challenges and opportunities experienced during a CBPR project in Jamaica that aimed to strengthen nurses’ engagement in HIV and AIDS policy. The project involved diverse HIV and AIDS stakeholder groups: frontline nurses, nurse managers, researchers, health care decision makers, and other community members, including people living with HIV or AIDS. The ethical challenges and opportunities faced by this diverse partnership are outlined using a relational public health ethics framework.
  • Greene, S. (2013). Peer research assistantships and the ethics of reciprocity in community-based research. Journal of Empirical Research on Human Research Ethics, 8(2), 141-152.

    • A major component of community-based research in the field of HIV is the Meaningful Involvement of People Living with HIV/AIDS (MIPA) through hiring, training and supporting peer research assistants (PRAs). This article discusses some of the ethical tensions related to the PRA/researcher relationship, the relationship of the PRA to the research itself, and suggestions for how to move forward in addressing these tensions.
  • Locke, T., Alcorn, N., & O’Neill, J. (2013). Ethical issues in collaborative action research. Educational Action Research, 21(1), 107-123.

    • Researchers conducting collaborative, participatory action research often face dilemmas in attempting to work within conventional university-based ethical approval procedures. In response to these challenges, the authors derived a set of eight ethical principles that reflect both the conceptual assumptions on which collaborative, participatory action research is based, and the nature of the values, relationships, and decision-making that it practically involves. The authors apply these principles in a discussion of a number of collaborative action research case studies. The article concludes with recommendations for changes to the university ethical review process.
  • Marshall, Z., Nixon, S., Nepveux, D., Vo, T., Wilson, C., Flicker, S.,…& Proudfoot, D. (2012). Navigating risks and professional roles: Research with lesbian, gay, bisexual, trans, and queer young people with intellectual disabilities. Journal of Empirical Research on Human Research Ethics, 7(4), 20-33.

    • This article examines ethical issues that emerged during a CBPR study in Toronto, Canada, exploring sexual health attitudes and practices among lesbian, gay, bisexual, trans, queer, and questioning young people labeled with intellectual disabilities. The authors then explain how incorporating critical disability perspectives and a heightened awareness of professional role conflict into CBPR practices has the potential to foster development of more inclusive and accessible research environments.
  • Ponic, P. & Jategaonkar, N. (2012). Balancing safety and action: Ethical protocols for photovoice research with women who have experienced violence. Arts & Health: International Journal for Research, Policy, and Practice, 4(3), 189-202.
    • This paper describes and reflects on an ethics and safety protocol to conduct Photovoice research with women who have experienced intimate partner violence. The Protocol was developed as a way to navigate the tensions among three imperative aspects of the study: (a) maintaining the confidentiality and safety of participants, (b) using the data for action and knowledge exchange activities, and (c) working to destabilize traditional power relations between researchers and participants. The Protocol provides an example of how ethical and safety tensions associated with conducting action-oriented methods with members of marginalized populations can be addressed.
  • Puffer, E. S., Pian, J., Sikkema, K. J., Ogwang-Odhiambo, R. A., & Broverman, S. A. (2013). Developing a family-based HIV prevention intervention in rural Kenya: Challenges in conducting community-based participatory research. Journal of Empirical Research on Human Research Ethics, 8(2), 119-128.
    • This paper discusses the ethical challenges faced by a CBPR study in rural Kenya to develop and pilot a family-based HIV prevention and mental health promotion intervention. The ethical challenges that emerged related to: negotiating power imbalances between academic partners and the community advisory committee; the community advisory committee members’ shifting roles as part of the committee and the wider community; and anticipated challenges in decision making about sustainability.
  • Rink, E., Montgomery-Andersen, R., Koch., A, Mulvad, G., & Gesink, D. (2013). Ethical challenges and lessons learned from Inuulluataareq–“Having the Good Life Study”: A community-based participatory research project in Greenland. Journal of Empirical Research on Human Research Ethics, 8(2), 110-118.

    • This paper presents the ethical challenges and lessons learned over the course of a four-year CBPR project conducted on sexually transmitted infections (STIs) in Greenland. Specifically discussed is Inuulluataareq, the “Having the Good Life” study, the first CBPR project implemented in Greenland. Ethical issues discussed are: (1) the complexity of working with multiple IRBs on an international health research project using a CBPR framework; (2) unexpected influences on health policy; and (3) the dynamic of balancing community practices with academic research requirements.
  • Smith, S. A., & Blumenthal, D. S. (2012). Community health workers support community-based participatory research ethics: Lessons learned along the research-to-practice-community continuum. Journal of Health Care for the Poor and Underserved, 23(4, Supplement), 77-87.
    • This article explains how community health workers (CHWs) involved in CBPR projects support key CBPR ethics: community engagement, mutual learning, action-research, and commitment to sustainability. The authors present a case study in which CHWs were deployed at each phase of a 10-year CBPR project that translated an educational intervention in the research-to-practice-to-community continuum. The authors then discuss how the deployment of CHWs during this study supported the ethical conduct of research in the community.
  • Traube, D. E., Cederbaum, J. A., Kerkorian, D., Bhupali, C., & McKay, M. M. (2013). African American children’s perceptions of HIV-focused community-based participatory research. Journal of Empirical Research on Human Research Ethics, 8(1), 79-90.

    • This study examined factors influencing informed assent, initial involvement, and ongoing involvement in HIV-focused CBPR research for African American children. Study participants were recruited from the Collaborative HIV and Adolescent Mental Health Project and completed an interview that assessed their attitudes about research activities. Findings from the study are presented, and can help researchers develop procedures facilitating ethics boards to assess the appropriateness of child assent in HIV-focused CBPR.

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