Research Ethics

 

At Community-Campus Partnerships for Health (CCPH), our work on research ethics is focused in two main areas:

1. Advancing ethical research that minimizes risks and maximizes benefits for both the individuals and communities involved: Community-based participatory research (CBPR) represents a shift from regarding individual community members as research subjects to engaging community members and the organizations that represent or serve them as research partners. Institution-based research ethics boards, designed to protect the rights and welfare of individual study participants, are not well equipped to protect the rights and welfare of communities involved in research and may not provide a relevant or thorough ethical analysis of community-engaged research.  2. Ensuring that communities have power when it comes to decisions about whether and how research will be conducted: As CBPR is increasingly viewed as a rigorous, legitimate and effective approach to research, more community groups are being approached by researchers who want to conduct research in their communities, and more community groups are initiating their own research. To ensure the ethics and integrity of the research in which they and their communities are engaged, a growing number of community groups have developed their own research review processes that operate independently or in conjunction with institution-based research ethics boards.


Below we summarize our work in these areas and highlight our most requested resources. Visit our Resources pages for additional papers, reports, presentations and other products on research ethics.

Mobilize knowledge: Our CBPR ethics listserv is a virtual meeting place for the growing network of people involved and interested in CBPR ethics to share news items, ask questions and seek advice on ethical challenges. CCPH conferences provide an opportunity to deepen your knowledge in CBPR ethics through skill-building workshops, posters, exhibits and community site visits, not to mention the many informal opportunities to consult with experienced CBPR ethics experts from around the world.

In 2008, we edited and authored an editorial for an issue of the Journal of Empirical Research on Human Research Ethics on the theme “Advancing the Ethics of CBPR.”

In 2012, CCPH, The Bronx Health Link and the Albert Einstein College of Medicine convened representatives of Community IRBs and other community-based processes for research ethics review to celebrate successes, address challenges and share promising practices. The resulting report, Community IRBs and Research Review Boards: Shaping the Future of Community-Engaged Research includes a meeting summary and suggested resources. The resulting peer-reviewed paper, Community-Based Review of Research Across Diverse Community Contexts: Key Characteristics, Critical Issues, and Future Directions describes the diverse community review models represented.

Provide training and technical assistance: In 2007, CCPH and the Tuskegee University National Center for Bioethics in Research and Health Care jointly sponsored an educational conference call series on Institutional Review Boards and Ethical Issues in Research. The topics covered on the calls included explaining what an Institutional Review Board (IRB) is, navigating the IRB process, highlighting the importance of community members on IRBs and establishing community advisory boards and community IRBs. The proceedings, Ensuring Community-Level Research Protections, include presentation summaries and an extensive list of recommended resources. Our evidence-based online curriculum, Developing and Sustaining CBPR Partnerships contains a section on Ethics and CBPR.

We also provide on-site research ethics training and technical assistance through the CCPH Consultancy Network tailored to the particular needs of an organization or partnership. If you are looking for a research ethics expert to give a presentation, lead a workshop, or provide consultation, contact us today!

Conduct research: Our research seeks to understand the ethical issues that arise in CBPR and the role of community-based processes for research ethics review:

  • Understanding Community-Based Processes for Research Ethics Review: With support from the Greenwall Foundation, in 2009 we completed the first systematic study of community-based processes for research ethics review. We identified and described 109 operating and 30 emerging community-based processes for research ethics review in the U.S. and the nature of their relationships with institution-based IRBs.
  • National Collaborative Study of Community-Based Processes for Research Ethics Review: In 2013, we received funding from the National Institute for Environmental Health Sciences to conduct case studies of 5 community-based processes for research ethics review in partnership with their host community-based organizations. We presented preliminary findings from the cross-case analysis at the November 2013 American Public Health Association and Advancing Ethical Research conferences. We presented final study findings at the May 2014 Community-Campus Partnerships for Health conference. The final study report was released in August 2014.
  • Research Ethics Reconsidered in the Context of Community-Engaged Research: In 2014, we received a grant from the Greenwall Foundation to develop ethical principles, draft revisions to the Belmont Report and federal regulations for the protection of human research participants, and propose implementation scenarios that reflect the realities of community-engaged research. Read the final report for more information.

Advocate for supportive policies: We advocate for research ethics policies and practices that help to advance ethical CBPR. In 2009 we were invited to speak at a meeting of the Secretary's Advisory Committee on Human Research Protections (SACHRP) on CBPR ethics. In 2011, we submitted comments in response to the U.S. Department of Health and Human Services’ advance notice of proposed rulemaking on Human Subjects Research Protections: Enhancing Protections for Research Subjects and Reducing Burden, Delay, and Ambiguity for Investigators.” In 2015, we submitted comments in response to NIH's request for input on its draft policy to require the designation of a single IRB of record for multi-site studies.