"It's Like Tuskegee in Reverse": A Case Study of Ethical Tensions in Institutional Review Board Review of Community-Based Participatory Research

• Published in: American journal of public health (1971) Vol. 96; no. 11; pp. 1914 - 1919
• Main Authors: Malone, Ruth E, Yerger, Valerie B, McGruder, Carol, Froelicher, Erika
• Format: Journal Article
• Language: English
• Published: Washington, DC Am Public Health Assoc 01.11.2006; American Public Health Association; American Journal of Public Health 2006
• Subjects: Adult; African Americans; Behavior; Biological and medical sciences; Case studies; Cigarettes; Clinical trials; Commerce; Community; Community Health Planning - ethics; Community Health Planning - organization & administration; Community involvement; Community organizations; Community Participation; Community-Institutional Relations; Conflict of Interest; Conflicts of interest; Convenience stores; Data collection; Decision Making, Organizational; Empowerment; Ethics; Ethics Committees, Research - ethics; Ethics Committees, Research - organization & administration; Focus groups; Health Policy and Ethics; Humans; Institutionalization; Liquor stores; Medical sciences; Miscellaneous; Neighborhoods; Organizational Case Studies; Organizational Culture; Participatory research; Pharmacology. Drug treatments; Power; Power (Psychology); Public health; Public Health - ethics; Public health. Hygiene; Public health. Hygiene-occupational medicine; Research Support as Topic - ethics; Research Support as Topic - organization & administration; Residence Characteristics; Review boards; Risk; Risk Management; San Francisco; Smoking cessation; Social Justice; Social research; Socioeconomic Factors; State laws; Tobacco; Tobacco Industry - legislation & jurisprudence; Universities - ethics; Universities - organization & administration; Urban Population; Vulnerable Populations; USA, California, San Francisco; Case study; Ethics; Scientific research; Community participation; Clinical trial; Clinical research; Review; Community action for health; Bibliographic review; Public health; Institution person relation
• DOI: 10.2105/AJPH.2005.082172
• ISSN: 0090-0036; 1541-0048

Community-based participatory research (CBPR) addresses the social justice dimensions of health disparities by engaging marginalized communities, building capacity for action, and encouraging more egalitarian relationships between researchers and communities. CBPR may challenge institutionalized academic practices and the understandings that inform institutional review board deliberations and, indirectly, prioritize particular kinds of research. We present our attempt to study, as part of a CBPR partnership, cigarette sales practices in an inner-city community. We use critical and communitarian perspectives to examine the implications of the refusal of the university institutional review board (in this case, the University of California, San Francisco) to approve the study. CBPR requires expanding ethical discourse beyond the procedural, principle-based approaches common in biomedical research settings. The current ethics culture of academia may sometimes serve to protect institutional power at the expense of community empowerment.