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Yale Bioethics

Community Based Research: New Ethical Challenges

Resources

General

  1. CARE’S “Principles and Guidelines for Community-University Research Partnerships”
  2. Silka, Linda; G. Dean Cleghorn, Milagro Grullón, Trinidad Tellez. “Creating Community-Based Participatory Research in a Diverse Community: A Case Study”. Journal of Empirical Research on Human Research Ethics, Jun 2008, 3(2): 5–16. 
  3. See other articles from the above issue at http://caliber.ucpress.net/toc/jer/3/2
  4. Lists of Community-Based Participatory Research (CBPR) Resources: http://depts.washington.edu/ccph/pdf_files/rwjcsp-cbpr-resources.pdf http://depts.washington.edu/ccph/pdf_files/CP-Bibliography.pdf http://depts.washington.edu/ccph/pdf_files/resources_CBPR_108.pdf http://depts.washington.edu/ccph/pdf_files/FinalResearchEthicsCallSeriesReport.pdf
  5. A description of the EPA Community-Based Cumulative Risk Program, including links to publications:  http://www.epa.gov/heasd/risk/projects/c3a_risk_assessment_tools.htm   
  6. A link to the grant program offered by the EPA in support of community-based programs:  www.epa.gov/care
  7. UC Berkeley School of Public Health Team & PolicyLink Team.  “Promoting Healthy Public Policy through Community-Based Participatory Research: Ten Case Studies”.
  8. Canadian Institutes of Health Research.  “CIHR Guidelines for Health Research Involving Aboriginal People”. 2007.
  9. Working Group for the Study of Ethical Issues in International Nursing Research; Chair Douglas P Olsen.  “Ethical Considerations in International Nursing Research: A report from the International Centre for Nursing Ethics”.  Nursing Ethics. 2003, 10(2).
  10. Reis, Stephen E. University of Pittsburgh Clinical and Translational Science Award Proposal: CTSI Community PARTners (Partnering to Assist Research and Translation) Program.  2006.  General proposal
  11. Cahill, Caitlin; Farhana Sultana & Rachel Pain, eds. ACME: An International E-Journal for Critical Geographies. December 2007, 6(3). Special Thematic Issue: Participatory Ethics
  12. Yale Center for Interdisciplinary Research on AIDS Selected Articles on Dissemination & Translational Research
  13. Women's Health Research Network Our Common Ground: Cultivating Women's Health Through Community-Based Research
  14. Campus Compact Research University Engaged Scholarship Toolkit

 Group 1: Define “community” and “community research”

  1. Cochran, Patricia A.L.; Catherine A. Marshall, Carmen Garcia-Downing, Elizabeth Kendall, Doris Cook, Laurie McCubbin, and Rev. Mariah S. Gover. “Indigenous Ways of Knowing: Implications for Participatory Research  and Community” Am J Public Health 2008,98:22-27
  2. Mechanic, D. & Tanner, J. “Vulnerable people, groups and populations: Societal view”. Health Affairs, 2007, 26(5):1220-1230.
  3. Committee on Native American Child Health and Committee on Community Health Services. “Ethical Considerations in Research With Socially Identifiable Populations”.  (policy statement)
  4. Kahnawake Schools Diabetes Prevention Project. Code of Research Ethics, 2007.
  5. The Clinical and Translational Science Award (CTSA) Consortium’s  Community Engagement Key Function Committee and the CTSA Community Engagement Workshop Planning Committee. “Researchers and Their Communities: The Challenge of Meaningful Community Engagement”.  (A summary of best practices emerging from a series of national and regional workshops on community engagement held in Bethesda, MD, St. Louis, MO, Chicago, Ill, New York, NY, Philadelphia, PA, and Sacramento, CA).
  6. Developing and Sustaining Community-Based Participatory Research Partnerships: A skill building curriculum.  Section 1.1.   Section 1.2.                Full curriculum.
  7. Schrag, Brian. "Research with Groups: Group Rights, Group Consent, and Collaborative Research". Science and Engineering Ethics, 2006, 12(3):511-521.

Group 2: Identify central tenets for ethical principles of community-university partnerships in research

  1. Blumenthal DS. “A community coalition board creates a set of values for community-based research”.  Preventing Chronic Disease. January 2006, 3(1).
  2. Shore, N. “Re-conceptualizing the Belmont Report: A community-based participatory research perspective”. Journal of Community Practice, 2006, 14:5-26.
  3. Stokols, D. “Translating social ecology theory into guidelines for community health promotion”. American Journal of Health Promotion, 1996,10: 282-98.
  4. Brown, David Richard; Agueda Hernandez, Gilbert Saint-Jean, Sian Evans, Ida Tafari, Luther G. Brewster, Michel J. Celestin, Carlos Gomez-Estefan, Fernando Regalado, Siri Akal, Barry Nierenberg, Elaine D. Kauschinger, Robert Schwartz, and J. Bryan Page. “A Participatory Action Research Pilot Study of Urban Health Disparities Using Rapid Assessment Response and Evaluation” Am J Public Health 2008, 98:28-38.
  5. Silka, Linda; Paulette Renault-Caragianes.  “Community-University Research Partnerships: Devising a Model for Ethical Engagement”. Journal of Higher Education Outreach and Engagement. 2006, 11(2):171.
  6. Yale Center for Interdisciplinary Research on AIDS. “Community Based HIV/AIDS Research: Guidelines for Successful Partnerships”. May 2006.
  7. Guidlines for CRAB [Community Research Advisory Board].
  8. Woolf, Steven H. “Social Policy as Health Policy”. JAMA. 2009,301(11):1166-1169.
  9. Weijer, C and PB Miller.  “Protecting communities in pharmacogenetic and pharmacogenomic research”The Pharmacogenomics Journal 2004, 4:9–16.
  10. CARE. "Beyond Scientific Publication: Strategies for Disseminating Research Findings".

Group 3: Consider new methods of community and IRB review of community based research

  1. Flicker, S. Travers, R. Guta, A, McDonald, S. & Meagher, A. “Ethical dilemmas in community-based participatory research: Recommendations for Institutional Review Boards”. Journal of Urban Health: Bulletin of the New York Academy of Medicine. 2007, 84:478-493.
  2. Israel, B., Schulz, A., Parker, E. & Becker, A. “Review of community-based research: Assessing partnership approaches to improve public health”. Annual Review of Public Health. 1998, 19:173-202.
  3. Seifer, Sarena D.; Nancy Shore, and Elaine Drew “Ethics of Community-Engaged ResearchPublic Responsibility in Medicine & Research Blog, Tuesday, February 24, 2009.
  4. Singer, Sharon.  “Citizen Participation in Public Policy Issues”.  A presentation for the Knowledge in Motion Conference & Institute for Public Administration of Canada, October 16, 2008.
  5. Carty, Kenneth R. “Are Citizens Up to Making Policy? Lessons from the Citizen’s Assemblies”. A presentation for the Knowledge in Motion Conference & Institute for Public Administration of Canada, October 16, 2008.
  6. U.S. Department of Housing and Urban Development Office of Policy Development and Research. “Empowering Local Communities through Leadership Development and Capacity Building”.  October 2007.
  7. Grignon J, Wong KA and Seifer SD. “Ensuring Community-Level Research Protections”. Proceedings of the 2007 Educational Conference Call Series on Institutional Review Boards and Ethical Issues in Research. Seattle, WA: Community-Campus Partnerships for Health, 2008.
  8. Centers for Disease Control and Prevention. “A Collective Voice for Well-Being: The Story of the National Community Committee”. Atlanta, GA: U.S. Department of Health and Human Services; 2008.
  9. Kolodziej, Monika; Gerardo Gonzalez, Kathleen Palm, Edwin Rosenthal, Doug Ziedonis. “Central Massachusetts Addiction Consortium: Creating Opportunities for Collaboration & Fostering Innovation”.  A poster for the Innovations in Addiction Conference, Boston, MA, May 4, 2009.
  10. Ford, Angela F. "The CRAB [Community Research Advisory Board]: Helping Investigators Think 'Outside the Box'".  A presentation for the American Public Health Association Annual Meeting Washington DC November 9, 2004.
  11. Guidlines for CRAB.
  12. Malone et al. "'It’s Like Tuskegee in Reverse': A Case Study of Ethical Tensions in Institutional Review Board Review of Community-Based Participatory Research". American Journal of Public Health. November 2006, 96 (11): 1914.
  13. Silka, Linda; Paulette Renault-Caragianes.  “Community-University Research Partnerships: Devising a Model for Ethical Engagement”. Journal of Higher Education Outreach and Engagement. 2006, 11(2):171.
  14. Silka, Linda; G. Dean Cleghorn, Milagro Grullón, Trinidad Tellez. “Creating Community-Based Participatory Research in a Diverse Community: A Case Study”. Journal of Empirical Research on Human Research Ethics, Jun 2008, 3(2): 5–16. 

Group 4: Identify or develop essential training approaches and educational materials for researchers and community leaders

  1. Community-Engaged Scholarship resource website.  Provides easy access to CCPH's community-engaged scholarship (CES) resources. http://depts.washington.edu/ccph/scholarship.html#References
  2. Potter, Margaret A. and Beth Quill, eds. “Demonstrating Excellence in Practice-Based Research for Public Health”.  Fall 2006.
  3. "Community-Based Participatory Research:  A Health Center Toolkit with Asian Americans, Native Hawaiians, and Pacific Islanders". This toolkit is a joint collaboration between the Association of Asian Pacific Community Health Organizations (AAPCHO) and the National Association of Community Health Centers (NACHC). It is intended as a handbook for CHCs and researchers interested in collaborative research activities. http://www.aapcho.org/site/aapcho/section.php?id=11295
  4. The Clinical and Translational Science Award (CTSA) Consortium’s  Community Engagement Key Function Committee and the CTSA Community Engagement Workshop Planning Committee. “Researchers and Their Communities: The Challenge of Meaningful Community Engagement”.  (A summary of best practices emerging from a series of national and regional workshops on community engagement held in Bethesda, MD, St. Louis, MO, Chicago, Ill, New York, NY, Philadelphia, PA, and Sacramento, CA).
  5. Yale Center for Interdisciplinary Research on AIDS Selected Articles on HIV/AIDS and General Community-Based Participatory Research & University – Community Research Partnerships
  6. CBPR ListServe Responses to Query on Training of Community (lay) Workers in Protection of Research Subjects
  7. Nunavut Research Institute, Inuit Tapiriit Kanatami. "Negotiating Research
    Relationships: A Guide for Communities"
    .
  8. Inuit Tapiriit Kanatami, Nunavut Research Institute. "Negotiating Research
    Relationships with Inuit Communities: A Guide for Researchers"
    .
  9. Research Ethics Training Curriculum for Community Representatives (RETC-CR): Family Health International's Office of International Research Ethics has developed a dynamic and innovative curriculum to empower community representatives through training and education to act as a competent voice for research participants worldwide. Developed and field-tested in eight countries, the RETC-CR helps community representatives to understand the research process and their roles and responsibilities as partners of the research team. The Curriculum also explains the corresponding roles and responsibilities of Ethics Committees/IRBs and Researchers. http://www.fhi.org/en/RH/Training/trainmat/ethicscurr/retccr.htm
  10. Reis, Stephen E. University of Pittsburgh Clinical and Translational Science Award Proposal: CTSI Community PARTners (Partnering to Assist Research and Translation) Program.  2006. Detailed proposal.
  11. Califf, Robert.  Duke Community Engagement Program.
  12. The Duke Translational Medicine Institute's website: www.dtmi.duke.edu/overview.
  13. A link to the Clinical Trials Network Best Practices page: https://www.ctnbestpractices.org/
  14. Barzyk et al. "Tools available to communities for conducting cumulative exposure and risk assessments". Journal of Exposure Science and Environmental Epidemiology. 2009. (Pre-publication).
  15. Publicly Available Assessment Tools.  (A PowerPoint presentation related to the above.)