Understanding community-based processes for research ethics review: A national study

American Journal of Public Health

Volumn 101, Issue SUPPL. 1, 2011, Pages

  Shore, Nancy ^a   Brazauskas, Ruta ^b   Drew, Elaine ^b   Wong, Kristine A ^c   Moy, Lisa ^c   Baden, Andrea Corage ^c   Cyr, Kirsten ^a   Ulevicus, Jocelyn ^a   Seifer, Sarena D ^c  

^a UNIVERSITY OF NEW ENGLAND   (United States)

^b MEDICAL COLLEGE OF WISCONSIN   (United States)

^c Community Campus Partnerships for Health ^*  (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; ECONOMICS; ETHICS; HUMAN; INFORMATION PROCESSING; PARTICIPATORY RESEARCH; PROFESSIONAL STANDARD; PUBLIC RELATIONS; STANDARD; UNITED STATES;

COMMUNITY-BASED PARTICIPATORY RESEARCH; COMMUNITY-INSTITUTIONAL RELATIONS; DATA COLLECTION; ETHICAL REVIEW; ETHICS COMMITTEES, RESEARCH; HUMANS; UNITED STATES;

EID: 81555207209     PISSN: 00900036     EISSN: 15410048     Source Type: Journal    
DOI: 10.2105/AJPH.2010.194340     Document Type: Review

References (50)

1. Community Health Scholars Program. Stories of Impact. Ann Arbor, MI: Community Health Scholars Program, School of Public Health, University of Michigan; 2001.
2. Green LW, Mercer SL. Can public health researchers and agencies reconcile the push from funding bodies and the pull from communities? Am J Public Health. 2001;91(12):1926-1929. (Pubitemid 33111635)
3. Institute of Medicine. Who Will Keep the Public Healthy? Educating Public Health Professionals for the 21st Century. Washington, DC: National Academies Press; 2002.
4. Centers for Disease Control and Prevention. Advancing the nation's health: a guide to public health research needs, 2006-2015. Available at: http://www.cdc.gov/od/science/PHResearch/cdcra/index-ad.htm. Accessed November 20, 2009.
5. O'Fallon LR, Dearry A. Community-based participatory research as a tool to advance environmental health sciences. Environ Health Perspect. 2002;110(2):155-159. (Pubitemid 34436378)
6. National Institute of Nursing Research, National Center on Minority Health and Health Disabilities. Community-partnered interventions in nursing research to reduce health disparities: state of the science meeting. Available at: http://www.scribd.com/doc/1106701/National-Institutes-of-Health- Communitypartneredinter-ventions. Accessed November 6, 2009.
7. American Public Health Association. Support for community-based participatory research in public health. Policy #2004-12. November 2004. Available at: http://www.apha.org/advocacy/policy/policysearch/default.htm?id= 1298. Accessed November 20, 2009.
8. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Washington, DC: US Dept of Health, Education, and Welfare; 1979.
9. Shore N. Re-conceptualizing the Belmont Report: a community-based participatory research perspective. J Community Pract. 2007;14(4):5-26.
10. Flicker S, Travers R, Guta A, McDonald S, Meagher A. Ethical dilemmas in community-based participatory research: recommendations for institutional review boards. J Urban Health. 2007;84(4):478-493. (Pubitemid 47075046)
11. Ross LF, Loup A, Nelson R, et al. Human subjects protections in community-engaged research: a research ethics framework. J Empir Res Hum Res Ethics. 2010;5(1):19-31.
12. Deeds BG, Castillo M, Beason Z, Cunningham S, Ellen J, Peralta L; Adolescent Trials Network for HIV/AIDS Interventions. An HIV prevention protocol reviewed at 15 national sites: how do ethics committees protect communities? J Empir Res Hum Res Ethics. 2008;3(2):77-86.
13. The Examining Community-Institutional Partnerships for Prevention Research Group. Developing and sustaining community-based participatory research partnerships: a skill-building curriculum. 2006. Available at: http://www.cbprcurriculum.info. Accessed November 24, 2010.
14. Malone RE, Fann VB, Yerger ND, McGruder C, Froelicher E. "It's like Tuskegee in reverse": a case study of ethical tensions in institutional review board review of community-based participatory research. Am J Public Health. 2006;96(11):1914-1919. (Pubitemid 44655913)
15. Quigley D. Perspective: a review of improved ethical practices in environmental and public health research: case examples from Native communities. Health Educ Behav. 2006;33(2):130-147. (Pubitemid 43306347)
16. Khanlou N, Peter E. Participatory action research: considerations for ethical review. Soc Sci Med. 2005;60(10):2333-2340. (Pubitemid 40313376)
17. Brugge D, Missaghian M. Protecting the Navajo people through tribal regulation of research. Sci Eng Ethics. 2006;12(3):491-507. (Pubitemid 44338000)
18. Macaulay AC, Cross EJ, Delormier T, et al. Developing a code of research ethics for research with a Native community in Canada: a report from the Kahnawake Schools Diabetes Prevention Project. Int J Circumpolar Health. 1998;57(1):38-40.
19. Gilbert SG. Supplementing the traditional institutional review board with an environmental health and community review board. Environ Health Perspect. 2006;114(10):1626-1629. (Pubitemid 44509667)
20. Freeman WL, Romero FC, Kanade S. Community consultation to assess and minimize group harms. In: Amdur RJ, Bankert EA, eds. Institutional Review Board: Management and Function. 2nd ed. Sudbury, MA: Jones and Bartlett; 2006:137-139.
21. Brydon-Miller M, Greenwood D. A re-examination of the relationship between action research and human subjects review processes. Action Res. 2006;4(1):117-128.
22. Navajo Nation IRB. A unique human research review board has three primary concerns: protecting its community, its people, and its heritage. Prot Hum Subj. 2003;8:1-2.
23. Travers R. Proposal for an Ethics Review Board of Community-Based HIV/AIDS Research in Ontario: An OHTN Position Paper. Toronto, ON: Ontario HIV Treatment Network; 2006.
24. Blumenthal DS. A community coalition board creates a set of values for community-based research. Prev Chronic Dis. 2006;3(1):A16.
25. Oneha MF, Beckham S. Re-examining community based research protocols. Pac Health Dialog. 2004;2(1):102-106.
26. Quinn SC. Ethics in public health research: protecting human subjects: the role of community advisory boards. Am J Public Health. 2004;94(6):918-922. (Pubitemid 38691533)
27. Strauss RP, Sengupta S, Quinn SC, et al. The role of community advisory boards: involving communities in the informed consent process. Am J Public Health. 2001;91(12):1938-1943. (Pubitemid 33114396)
28. Jacklin K, Kinoshameg P. Developing a participatory aboriginal health research project: "only if it's going to mean something." J Empir Res Hum Res Ethics. 2008;3(2):53-67.
29. American Association for Public Opinion Research. Standard Definitions: Final Dispositions of Case Codes and Outcome Rates for Surveys. 6th ed. Deerfield, IL: American Association for Public Opinion Research; 2009.
30. Bernard HR. Research Methods in Anthropology. 2nd ed. Walnut Creek, CA: Alta Mira; 1995.
31. Bakeman R, Gottman JM. Observing Interactions: An Introduction to Sequential Analysis. Cambridge, UK: Cambridge University Press; 1986.
32. De Vries R, Forsberg CP. Who decides? A look at ethics committee membership. HEC Forum. 2002;14(3):252-258.
33. Office of Human Research Protections, US Department of Health and Human Services. Meeting of the Secretary's Advisory Committee on Human Research Protections [agenda]. October 27-28, 2009. Available at: http://www.hhs.gov/ ohrp/sachrp/mtgings/mtg10-09/agenda.html. Accessed January 8, 2010.
34. Association for the Accreditation of Human Research Protection Programs. AAHRPP accreditation standards. October 1, 2009. Available at: http://www.aahrpp.org/Documents/D000230.PDF. Accessed January 8, 2010.
35. Anderson EE. A qualitative study of non-affiliated, non-scientist institutional review board members. Account Res. 2006;13(2):135-155.
36. Sengupta S, Lo B. The roles and experiences of nonaffiliated and non-scientist members of institutional review boards. Acad Med. 2003;78(2):212-218. (Pubitemid 36268295)
37. IRB/REB Workgroup on Community-Engaged Research. IRB/REB Curriculum on Ethical Considerations in Community-Engaged Research. Working Draft. Seattle, WA: Community-Campus Partnerships for Health; 2009.
38. Watkins BX, Shepard PM, Corbin-Mark CD. Completing the circle: a model for effective community review of environmental health research. Am J Public Health. 2009;99(S3):S567-S577.
39. Seifer SD, Wat E, Collins S. Enhancing community involvement in the IRB review process. Paper presented at: Association for the Accreditation of Human Research Protection Programs meeting; April 22-23, 2009; Los Angeles, CA.
40. Seifer SD, Greene-Moton E. Realizing the promise of community-based participatory research: community partners get organized [editorial]! Progress in Community Health Partnerships: Research. Education, and Action. 2007;1(4):291-294.
41. Recovery Act limited competition: building sustainable community-linked infrastructure to enable health science research (RC4). Available at: http://grants.nih.gov/grants/guide/rfa-files/RFA-OD-09-010.html. Accessed January 8, 2010.
42. Centers for Disease Control and Prevention. A Collective Voice for Well-Being: The Story of the National Community Committee. Atlanta, GA: Centers for Disease Control and Prevention, US Dept of Health and Human Services; 2008.
43. Wright B, Schwager PH. Online survey research: can response factors be improved? J Internet Commerce. 2008;7(2):253-269.
44. [Untitled announcement of grants for communitybased participatory research from the National Institute of Mental Health: R21]. Available at: http://grants.nih.gov/grants/guide/pa-files/PAR-07-004.html. Accessed November 6, 2009.
45. [Untitled announcement of grants for communitybased participatory research from the National Institute of Mental Health: R01]. Available at: http://grants.nih.gov/grants/guide/pa-files/PAR-07-133.html. Accessed November 6, 2009.
46. [Untitled announcement of grants for health disparities intervention research: RFA-MD-05-002]. Available at: http://grants2.nih.gov/grants/guide/rfa- files/RFA-MD-05-002.html. Accessed November 20, 2009.
47. NCMHD community-based participatory research (CBPR) initiative in reducing and eliminating health disparities: intervention research phase (R24). Available at: http://grants.nih.gov/grants/guide/rfa-files/rfa-md-07-003.html. Accessed November 20, 2009.
48. Alving B. Viewpoint: the grand challenges for the Clinical and Translational Science Awards. Association of American Medical Colleges Web site. Available at: http://www.aamc.org/newsroom/reporter/june07/89204/june07- viewpoint.html. Accessed November 6, 2009.
49. CARE: Community Alliance for Research and Engagement, Ethical Principles of Engagement Work Group, and the Yale Interdisciplinary Center for Bioethics present "Community-Based Research: New Ethical Challenges" [conference final report]. 2009. Available at: http://www.yale.edu/bioethics/contribute- documents/CBRconffinalreport.pdf. Accessed January 8, 2010.
50. Community Engagement Key Function Committee. Clinical and Translational Science Awards Web site. 2009. Available at: http://www.ctsaweb.org/index.cfm? fuseaction=committee.viewCommittee&com-ID=3&abbr=CEKFC. Accessed January 8, 2010.