Literature DB >> 17018816

"It's like Tuskegee in reverse": a case study of ethical tensions in institutional review board review of community-based participatory research.

Ruth E Malone1, Valerie B Yerger, Carol McGruder, Erika Froelicher.   

Abstract

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.

Mesh:

Year:  2006        PMID: 17018816      PMCID: PMC1751809          DOI: 10.2105/AJPH.2005.082172

Source DB:  PubMed          Journal:  Am J Public Health        ISSN: 0090-0036            Impact factor:   9.308


  29 in total

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Authors:  L W Green; S L Mercer
Journal:  Am J Public Health       Date:  2001-12       Impact factor: 9.308

2.  Principlism and communitarianism.

Authors:  D Callahan
Journal:  J Med Ethics       Date:  2003-10       Impact factor: 2.903

3.  Community-based participatory research: implications for public health funding.

Authors:  Meredith Minkler; Angela Glover Blackwell; Mildred Thompson; Heather Tamir
Journal:  Am J Public Health       Date:  2003-08       Impact factor: 9.308

Review 4.  Community-based participatory research: assessing the evidence.

Authors:  M Viswanathan; A Ammerman; E Eng; G Garlehner; K N Lohr; D Griffith; S Rhodes; C Samuel-Hodge; S Maty; L Lux; L Webb; S F Sutton; T Swinson; A Jackman; L Whitener
Journal:  Evid Rep Technol Assess (Summ)       Date:  2004-08

5.  Clinical decision making during public health emergencies: ethical considerations.

Authors:  Bernard Lo; Mitchell H Katz
Journal:  Ann Intern Med       Date:  2005-10-04       Impact factor: 25.391

6.  Enhancing lives through the development of a community-based participatory action research programme.

Authors:  Tina Koch; Pam Selim; Debbie Kralik
Journal:  J Clin Nurs       Date:  2002-01       Impact factor: 3.036

7.  Creating critical consciousness in health: applications of Freire's philosophy and methods to the health care setting.

Authors:  M Minkler; K Cox
Journal:  Int J Health Serv       Date:  1980       Impact factor: 1.663

8.  Ethics that exclude: the role of ethics committees in lesbian and gay health research in South Africa.

Authors:  J de Gruchy; S Lewin
Journal:  Am J Public Health       Date:  2001-06       Impact factor: 9.308

9.  Sociocultural variables in youth access to tobacco: replication 5 years later.

Authors:  H Landrine; E A Klonoff; R Campbell; A Reina-Patton
Journal:  Prev Med       Date:  2000-05       Impact factor: 4.018

10.  Individual good and common good: a communitarian approach to bioethics.

Authors:  Daniel Callahan
Journal:  Perspect Biol Med       Date:  2003       Impact factor: 1.416

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  28 in total

1.  An innovative method to involve community health workers as partners in evaluation research.

Authors:  Nadine Peacock; L Michele Issel; Stephanie J Townsell; Theresa Chapple-McGruder; Arden Handler
Journal:  Am J Public Health       Date:  2011-10-20       Impact factor: 9.308

2.  Addiction research ethics and the Belmont principles: do drug users have a different moral voice?

Authors:  Celia B Fisher
Journal:  Subst Use Misuse       Date:  2010-11-15       Impact factor: 2.164

Review 3.  Community-based participatory research and smoking cessation interventions: a review of the evidence.

Authors:  Jeannette O Andrews; Susan D Newman; Janie Heath; Lovoria B Williams; Martha S Tingen
Journal:  Nurs Clin North Am       Date:  2011-12-14       Impact factor: 1.208

4.  Challenges to Studying Illicit Drug Users.

Authors:  Jennie E Ryan; Suzanne C Smeltzer; Nancy C Sharts-Hopko
Journal:  J Nurs Scholarsh       Date:  2019-05-20       Impact factor: 3.176

5.  Enhancing stewardship of community-engaged research through governance.

Authors:  John G Oetzel; Malia Villegas; Heather Zenone; Emily R White Hat; Nina Wallerstein; Bonnie Duran
Journal:  Am J Public Health       Date:  2015-04-16       Impact factor: 9.308

6.  Health Literacy and Informed Consent Materials: Designed for Documentation, Not Comprehension of Health Research.

Authors:  Vanessa Watts Simonds; Eva Marie Garroutte; Dedra Buchwald
Journal:  J Health Commun       Date:  2017-07-31

7.  Awareness of Federal Regulatory Mechanisms Relevant to Community-Engaged Research: Survey of Health Disparities-Oriented NIH-Funded Investigators.

Authors:  Stephanie M Fullerton; Emily E Anderson; Ketch Cowan; Rachel C Malen; Doug Brugge
Journal:  J Empir Res Hum Res Ethics       Date:  2014-12-10       Impact factor: 1.742

8.  Institutional ethical review and ethnographic research involving injection drug users: a case study.

Authors:  Will Small; Lisa Maher; Thomas Kerr
Journal:  Soc Sci Med       Date:  2013-12-18       Impact factor: 4.634

9.  Understanding the experiences of youth living with sickle cell disease: a photovoice pilot.

Authors:  Jessica M Valenzuela; Lisa M Vaughn; Lori E Crosby; Heather Strong; Alexandra Kissling; Monica J Mitchell
Journal:  Fam Community Health       Date:  2013 Apr-Jun

10.  Views of academic and community partners regarding participant protections and research integrity: a pilot focus group study.

Authors:  Emily E Anderson
Journal:  J Empir Res Hum Res Ethics       Date:  2013-02       Impact factor: 1.742

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