Fulfilling Ethical Responsibility: Moving Beyond the Minimal Standards of Protecting Human Subjects from Research Harm

• Published in: Progress in community health partnerships Vol. 9; no. 2; pp. 41 - 50
• Main Authors: Hébert, James R, Satariano, William A, Friedman, Daniela B, Armstead, Cheryl A, Greiner, Allen, Felder, Tisha M, Coggins, Thomas A, Tanjasiri, Sora, Braun, Kathryn L
• Format: Journal Article
• Language: English
• Published: United States Johns Hopkins University Press 01.01.2015
• Subjects: Biomedical research; Cancer; Clinical trials; Collaboration; Community involvement; Community Networks - organization & administration; Community-Based Participatory Research - ethics; Community-Based Participatory Research - organization & administration; Disease; Disease prevention; Ethics; Ethics, Research; Health disparities; Human subjects; Humans; Medical research; Minority Groups; National Cancer Institute (U.S.) - organization & administration; Neoplasms - ethnology; Public health; Racial Groups; Research Subjects; Researchers; Studies; United States; United States
• ISSN: 1557-0541; 1557-055X; 1557-055X
• DOI: 10.1353/cpr.2015.0021

Problem: Rules for protecting human subjects, in place federally since 1974, have focused primarily on guarding against placing research subjects at social, physical, or psychological risk or violating their privacy and confidentiality. Nevertheless, high-risk communities are routinely subjected to “sins of omission,” which limit access to potentially significant research opportunities and result in the absence of studies that could confer high degree of community beneficence. Purpose of Article: To describe “sins of omission” and provide examples from the Community Networks Program Centers (CNPC) to illustrate how community-based participatory research (CBPR) can prevent them. Key Points: CBPR is an effective antidote to sins of omission. Activities undertaken by the CNPCs illustrate how adherence to CBPR principles can improve research access and outcomes. Conclusions: By working with community members as partners, we expand the concept of beneficence to include “community beneficence,” thus reducing the probability of “sins of omission.”