Variation in the interpretation of scientific integrity in community-based participatory health research

Abstract

Community-based participatory research (CBPR) has become essential in health disparities and environmental justice research; however, the scientific integrity of CBPR projects has become a concern. Some concerns, such as appropriate research training, lack of access to resources and finances, have been discussed as possibly limiting the scientific integrity of a project. Prior to understanding what threatens scientific integrity in CBPR, it is vital to understand what scientific integrity means for the professional and community investigators who are involved in CBPR. This analysis explores the interpretation of scientific integrity in CBPR among 74 professional and community research team members from of 25 CBPR projects in nine states in the southeastern United States in 2012. It describes the basic definition for scientific integrity and then explores variations in the interpretation of scientific integrity in CBPR. Variations in the interpretations were associated with team member identity as professional or community investigators. Professional investigators understood scientific integrity in CBPR as either conceptually or logistically flexible, as challenging to balance with community needs, or no different than traditional scientific integrity. Community investigators interpret other factors as important in scientific integrity, such as trust, accountability, and overall benefit to the community. This research demonstrates that the variations in the interpretation of scientific integrity in CBPR call for a new definition of scientific integrity in CBPR that takes into account the understanding and needs of all investigators.

Perceptions That Influence the Maintenance of Scientific Integrity in Community-Based Participatory Research

“…The perceptions that promote and discourage scientific integrity in CBPR identified by professional and community investigators reveal that the real and ideal in CBPR are still a work in progress for the majority of projects (Kraemer Diaz et al, 2013). Understanding the perceptions that promote and discourage CBPR scientific integrity can lead to better scientific integrity and support for the CBPR approach.…”

“…Communication is a principle of scientific integrity by the European Science Foundation because it enables discussion with other scientists and sharing with the public (Drenth, 2009). Communication and trust have been identified as important components of CBPR (Cargo & Mercer, 2008; Kraemer Diaz et al, 2013) and are part of the process of cosharing projects in CBPR (Holkup et al, 2004; Wallerstein, 1999). Strong communication enables coresponsibility between both partners for each project step.…”

“…The wide variation present in the implementation and definition of scientific integrity in CBPR among professional and community investigators highlights the importance of identifying barriers and facilitators to scientific integrity (Kraemer Diaz, Spears Johnson, & Arcury, 2013). This article explores perceptions that promote and discourage scientific integrity in CBPR among a sample of professional and community CBPR investigators.…”

Ethics and Science in the Participatory Era: A Vignette-Based Delphi Study

“…Many participatory researchers report that they confront novel ethical dilemmas that are beyond the scope of academic IRBs or impossible to resolve based on the Belmont principles (Malone, Yerger, McGruder, & Froelicher, 2006; Shore, 2007; Wilson, Kenny, & Dickson-Swift, 2017). In many participatory research projects, ethical priorities are neither determined a priori nor rigidly codified (Kraemer-Diaz, Spears Johnson, & Arcury, 2013). Participatory researchers adopt oversight procedures (e.g., community research review boards) and ethical priorities through local consensus that may be project-specific (Cordner, Ciplet, Brown, & Morell-Frosch, 2012; Stellefson, Paige, Alber, Barry, & James, 2015).…”

On using ethical principles of community-engaged research in translational science

“…CEnR practitioners argue that the Belmont principles are limited in scope and are too abstract, which limits their interpretation and application. 11,12 They suggest that investigators should not only consider interests of, and owe certain ethical obligations to, “human subjects” participating in research, but should also be concerned about those community stakeholders who are engaged in the actual conduct of research and take into consideration interests of communities these stakeholders represent. 13 Moreover, the principle of respect for persons assumes that individuals should be given an opportunity to make an autonomous decision.…”