Skip to main content
SpringerLink
Log in

Ethical Issues in Community-Based, Participatory, and Action-Oriented Forms of Research

State of the Field and Future Directions

  • Reference work entry
  • First Online:
Handbook of Research Ethics and Scientific Integrity

Abstract

This chapter explores ethical issues in community-based, participatory, and action-oriented forms of research (CBPAR). These approaches to research have evolved from diverse philosophical, theoretical, and disciplinary traditions but share a commitment to bringing researchers, community members (those most affected by a social or health issue), and other relevant stakeholders together in meaningful ways to conduct research (e.g., to co-develop the research questions, collect and analyze the data, and disseminate the findings). This level of collaboration between the researcher and the researched is understood to blur traditional boundaries and safeguards, and raises important questions about ethics and scientific integrity in CBPAR. This chapter will provide an overview of key debates in the social science and research ethics literature about the suitability of contemporary research ethics review processes for CBPAR. In addition to discussing the ethics review process, this chapter will also explore emerging scholarship about what it means to be an ethical researcher working in a CBPAR tradition and negotiating different conceptions of science, ethics, and worldviews.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 449.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Hardcover Book
USD 599.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  • Adair CE, Kopp B, Distasio J, Hwang SW, Lavoie J, Veldhuizen S, Voronka J, Kaufman AF, Somers JM, SR LB, Cote S, Addorisio S, Matte D, Goering P (2016) Housing quality in a randomized controlled trial of Housing First for homeless individuals with mental illness: correlates and associations with outcomes. J Urban Health 93(4):682–697. https://doi.org/10.1007/s11524-016-0062-9

    Article  Google Scholar 

  • Adelman C (1993) Kurt Lewin and the origins of action research. Educ Action Res 1(1):7–24

    Article  Google Scholar 

  • Aldridge J (2016) Participatory research: working with vulnerable groups in research and practice. Policy Press, Bristol

    Google Scholar 

  • Balazs CL, Morello-Frosch R (2013) The three Rs: how community-based participatory research strengthens the rigor, relevance, and reach of science. Environ Justice 6(1):9–16

    Article  Google Scholar 

  • Banks S, Armstrong A, Carter K, Graham H, Hayward P, Henry A et al (2013) Everyday ethics in community-based participatory research. Contemp Soc Sci 8(3):263–277

    Article  Google Scholar 

  • Bean S, Silva DS (2010) Betwixt & between: peer recruiter proximity in community-based research. Am J Bioeth 10(3):18–19

    Article  Google Scholar 

  • Black KZ, Hardy CY, De Marco M, Ammerman AS, Corbie-Smith G, Council B et al (2013) Beyond incentives for involvement to compensation for consultants: increasing equity in CBPR approaches. Prog Community Health Partnersh 7(3):263

    Article  Google Scholar 

  • Blake MK (2007) Formality and friendship: research ethics review and participatory action research. ACME Int EJ Crit Geogr 6(3):411–421

    Google Scholar 

  • Boser S (2006) Ethics and power in community-campus partnerships for research. Action Res 4(1):9–21

    Article  Google Scholar 

  • Brear M (2018) Ethical research practice or undue influence? Symbolic power in community- and individual-level informed consent processes in community-based participatory research in Swaziland. J Empir Res Hum Res Ethics 13(4):311–322

    Article  Google Scholar 

  • Boser S (2007) Power, ethics, and the IRB: dissonance over human participant review of partici-patory research. Qual Inq 13(8):1060–1074

    Google Scholar 

  • Calleson DC, Jordan C, Seifer SD (2005) Community-engaged scholarship: is faculty work in communities a true academic enterprise? Acad Med 80(4):317–321

    Article  Google Scholar 

  • Campbell-Page RM, Shaw-Ridley M (2013) Managing ethical dilemmas in community-based participatory research with vulnerable populations. Health Promot Pract 14(4):485–490

    Article  Google Scholar 

  • Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada (2014a) Tri-council policy statement: ethical conduct for research involving humans. Chapter 10. Qualitative research, pp 139–142, Ottawa. Retrieved from http://www.pre.ethics.gc.ca

  • Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada (2014b) Tri-council policy statement: ethical conduct for research involving humans. Ottawa. Retrieved from http://www.pre.ethics.gc.ca

  • Castleden H, Sylvestre P, Martin D, McNally M (2015) “I don’t think that any peer review committee... would ever ‘get’ what I currently do”: how institutional metrics for success and merit risk perpetuating the (re)production of colonial relationships in community-based participatory research involving indigenous peoples in Canada. Int Indigenous Policy J 6(4):2

    Article  Google Scholar 

  • Chevalier JM, Buckles DJ (2013) Participatory action research: theory and methods for engaged inquiry. Routledge, Abingdon

    Book  Google Scholar 

  • Cornwall A, Jewkes R (1995) What is participatory research? Soc Sci Med 41(12):1667–1676

    Article  Google Scholar 

  • Costa L, Voronka J, Landry D, Reid J, Mcfarlane B, Reville D, Church K (2012) Recovering our stories: a small act of resistance. Stud Soc Justice 6(1):85–101

    Article  Google Scholar 

  • Creighton G, Oliffe JL, Ferlatte O, Bottorff J, Broom A, Jenkins EK (2018) Photovoice ethics: critical reflections from men’s mental health research. Qual Health Res 28(3):446–455

    Article  Google Scholar 

  • Cross JE, Pickering K, Hickey M (2015) Community-based participatory research, ethics, and institutional review boards: untying a Gordian knot. Crit Sociol 41(7-8):1007–1026

    Article  Google Scholar 

  • Damon W, Callon C, Wiebe L, Small W, Kerr T, McNeil R (2017) Community-based participatory research in a heavily researched inner city neighbourhood: perspectives of people who use drugs on their experiences as peer researchers. Soc Sci Med 176:85–92

    Article  Google Scholar 

  • Downie J, Cottrell B (2001) Community-based research ethics review: reflections on experience and recommendations for action. Health Law Rev 10(1):8–17

    Google Scholar 

  • Faulkner A (2004) The ethics of survivor research: guidelines for the ethical conduct of research carried out by mental health service users and survivors. Policy Press, Bristol

    Google Scholar 

  • Flicker S, Travers R, Guta A, McDonald S, Meagher A (2007) Ethical dilemmas in community-based participatory research: recommendations for institutional review boards. J Urban Health 84(4):478–493

    Article  Google Scholar 

  • Flicker S, Roche B, Guta A (2010) Peer research in action 3: ethical issues. Wellesley Institute, Toronto

    Google Scholar 

  • Flicker S, O’campo P, Monchalin R, Thistle J, Worthington C, Masching R, Guta A, Pooyak S, Whitebird W, Thomas C (2015) Research done in “a good way”: the importance of indigenous elder involvement in HIV community-based research. Am J Public Health 105(6):1149–1154

    Article  Google Scholar 

  • Fouché CB, Chubb LA (2017) Action researchers encountering ethical review: a literature synthesis on challenges and strategies. Educ Action Res 25(1):23–34

    Article  Google Scholar 

  • Fox NJ (2003) Practice-based evidence: towards collaborative and transgressive research. Sociology 37(1):81–102

    Article  Google Scholar 

  • Friere P (1993) Pedagogy of the oppressed: new revised 20th anniversary edition. Continuum, New York

    Google Scholar 

  • Glass RD, Morton JM, King JE, Krueger-Henney P, Moses MS, Sabati S, Richardson T (2018) The ethical stakes of collaborative community-based social science research. Urban Educ 53(4):503–531

    Article  Google Scholar 

  • Greene S, Ahluwalia A, Watson J, Tucker R, Rourke SB, Koornstra J, Sobota M, Monette L, Byers S (2009) Between skepticism and empowerment: the experiences of peer research assistants in HIV/AIDS, housing and homelessness community-based research. Int J Soc Res Methodol 12(4):361–373

    Article  Google Scholar 

  • Greenhalgh T, Jackson C, Shaw S, Janamian T (2016) Achieving research impact through co-creation in community-based health services: literature review and case study. The Milbank Quarterly 94(2):392–429

    Article  Google Scholar 

  • Greer AM, Pauly B, Scott A, Martin R, Burmeister C, Buxton J (2018a) Paying people who use illicit substances or ‘peers’ participating in community-based work: a narrative review of the literature. Drugs: Educ Prevent Policy:1–13

    Google Scholar 

  • Greer AM, Amlani A, Pauly B, Burmeister C, Buxton JA (2018b) Participant, peer and PEEP: considerations and strategies for involving people who have used illicit substances as assistants and advisors in research. BMC Public Health 18(1):834

    Article  Google Scholar 

  • Guta A, Flicker S, Roche B (2010a) Peer research in action 2: management, support and supervision. Wellesley Institute, Toronto

    Google Scholar 

  • Guta A, Wilson MG, Flicker S, Travers R, Mason C, Wenyeve G, O’campo P (2010b) Are we asking the right questions? a review of Canadian REB practices in relation to community-based participatory research. J Empir Res Hum Res Ethics 5(2):35–46

    Article  Google Scholar 

  • Guta A, Nixon S, Gahagan J, Fielden S (2012) “Walking along beside the researcher”: how Canadian REBs/IRBs are responding to the needs of community-based participatory research. J Empir Res Hum Res Ethics 7(1):17–27

    Article  Google Scholar 

  • Guta A, Flicker S, Roche B (2013a) Governing through community allegiance: a qualitative examination of peer research in community-based participatory research. Crit Public Health 23(4):432–451

    Article  Google Scholar 

  • Guta A, Nixon SA, Wilson MG (2013b) Resisting the seduction of “ethics creep”: using Foucault to surface complexity and contradiction in research ethics review. Soc Sci Med 98:301–310

    Article  Google Scholar 

  • Guta A, Flicker S, Travers R, Wilson M, Strike S, Gaudry S, Binder L, O’Campo P, Kuzmanovic D (2014a) HIV CBR ethics fact sheet #6: confidentiality in close-knit communities. Improving the accessibility of research ethics boards for HIV community-based research in Canada. ON, Toronto

    Google Scholar 

  • Guta A, Strike C, Flicker S, Murray SJ, Upshur R, Myers T (2014b) Governing through community-based research: lessons from the Canadian HIV research sector. Soc Sci Med 123:250–261

    Article  Google Scholar 

  • Guta A, Murray SJ, Strike C, Flicker S, Upshur R, Myers T (2016) Governing well in community-based research: lessons from Canada’s HIV research sector on ethics, publics and the care of the self. Public Health Ethics 10(3):315–328

    Google Scholar 

  • Haggerty KD (2004) Ethics creep: governing social science research in the name of ethics. Qual Sociol 27(4):391–414

    Article  Google Scholar 

  • Hanza MM, Goodson M, Osman A, Capetillo MDP, Hared A, Nigon JA, Meiers SJ, Weis JA, Wieland ML, Sia IG (2016) Lessons learned from community-led recruitment of immigrants and refugee participants for a randomized, community-based participatory research study. J Immigr Minor Health 18(5):1241–1245

    Article  Google Scholar 

  • Hedgecoe A (2008) Research ethics review and the sociological research relationship. Sociology 42(5):873–886

    Article  Google Scholar 

  • Hoeyer K (2006) “Ethics wars”: reflections on the antagonism between bioethicists and social science observers of biomedicine. Hum Stud 29(2):203–227

    Article  Google Scholar 

  • Hoeyer K, Dahlager L, Lynöe N (2005) Conflicting notions of research ethics: the mutually challenging traditions of social scientists and medical researchers. Soc Sci Med 61(8):1741–1749

    Article  Google Scholar 

  • Horowitz CR, Robinson M, Seifer S (2009) Community-based participatory research from the margin to the mainstream: are researchers prepared? Circulation 119(19):2633–2642

    Article  Google Scholar 

  • International Compilation of Human Research Protections (2019) Compiled by: Office for Human Research Protections, U.S. Department of Health and Human Services. Retrieved from www.hhs.gov

  • Israel BA, Schulz AJ, Parker EA, Becker AB (1998) Review of community-based research: assessing partnership approaches to improve public health. Annu Rev Public Health 19(1):173–202

    Article  Google Scholar 

  • Israel BA, Schulz AJ, Parker EA, Becker AB (2008) Critical issues in developing and following community-based participatory research principles. In: Community-based participatory research for health. Jossey-Bass, San Francisco, pp 47–62

    Google Scholar 

  • Jagosh J, Bush PL, Salsberg J, Macaulay AC, Greenhalgh T, Wong G, Cargo M, Green LW, Herbert CP, Pluye P (2015) A realist evaluation of community-based participatory research: partnership synergy, trust building and related ripple effects. BMC Public Health 15(1):725

    Article  Google Scholar 

  • Kwan C, Walsh CA (2018) Ethical issues in conducting community-based participatory research: a narrative review of the literature. Qual Rep 23(2):369–386

    Google Scholar 

  • Lewin K (1946) Action research and minority problems. J Soc Issues 2(4):34–46

    Article  Google Scholar 

  • Logie C, James L, Tharao W, Loutfy MR (2012) Opportunities, ethical challenges, and lessons learned from working with peer research assistants in a multi-method HIV community-based research study in Ontario, Canada. J Empir Res Hum Res Ethics 7(4):10–19

    Article  Google Scholar 

  • Malone RE, Yerger VB, McGruder C, Froelicher E (2006) “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 96(11):1914–1919

    Article  Google Scholar 

  • Martin DG (2007) Bureacratizing ethics: institutional review boards and participatory research. ACME Int E-J Crit Geogr 6(3):319–328

    Google Scholar 

  • Mayan MJ, Daum CH (2016) Worth the risk? Muddled relationships in community-based participatory research. Qual Health Res 26(1):69–76

    Article  Google Scholar 

  • McTaggart R (ed) (1997) Participatory action research: international contexts and consequences. SUNY Press, Albany

    Google Scholar 

  • Melrose MJ (2001) Maximizing the rigor of action research: why would you want to? How could you? Field Methods 13(2):160–180

    Article  Google Scholar 

  • Mikesell L, Bromley E, Khodyakov D (2013) Ethical community-engaged research: a literature review. Am J Public Health 103(12):e7–e14

    Article  Google Scholar 

  • Milton B, Attree P, French B, Povall S, Whitehead M, Popay J (2011) The impact of community engagement on health and social outcomes: a systematic review. Commun Develop J 47(3):316–334

    Article  Google Scholar 

  • Minkler M (2004) Ethical challenges for the “outside” researcher in community-based participatory research. Health Educ Behav 31(6):684–697

    Article  Google Scholar 

  • Minkler M, Blackwell AG, Thompson M, Tamir H (2003) Community-based participatory research: implications for public health funding. Am J Public Health 93(8):1210–1213

    Article  Google Scholar 

  • Muhammad M, Wallerstein N, Sussman AL, Avila M, Belone L, Duran B (2015) Reflections on researcher identity and power: the impact of positionality on community based participatory research (CBPR) processes and outcomes. Crit Sociol 41(7-8):1045–1063

    Article  Google Scholar 

  • Nelson N, Wright S (1994) Power and participatory development: theory and practice. Intermediate Technology Publications, Bradford

    Google Scholar 

  • Nelson G, Macnaughton E, Curwood SE, Egalité N, Voronka J, Fleury MJ et al (2016) Collaboration and involvement of persons with lived experience in planning Canada’s At Home/Chez Soi project. Health Soc Care Commun 24(2):184–193

    Article  Google Scholar 

  • Newman SD, Andrews JO, Magwood GS, Jenkins C, Cox MJ, Williamson DC (2011) Peer reviewed: community advisory boards in community-based participatory research: a synthesis of best processes. Prev Chronic Dis 8(3)

    Google Scholar 

  • Park P (1997) Participatory research, democracy, and community. Pract Anthropol 19(3):8–13

    Article  Google Scholar 

  • Perez LM, Treadwell HM (2009) Determining what we stand for will guide what we do: Community priorities, ethical research paradigms, and research with vulnerable populations. Am J Public Health 99(2):201–204

    Article  Google Scholar 

  • Petrova E, Dewing J, Camilleri M (2016) Confidentiality in participatory research: Challenges from one study. Nurs Ethics 23(4):442–454

    Article  Google Scholar 

  • Piat M, Polvere L, Kirst M, Voronka J, Zabkiewicz D, Plante MC, Isaak C, Nolin D, Nelson G, Goering P (2015) Pathways into homelessness: Understanding how both individual and structural factors contribute to and sustain homelessness in Canada. Urban Stud 52(13):2366–2382

    Article  Google Scholar 

  • Roche B, Guta A, Flicker S (2010) Peer research in action 1: models of practice. Wellesley Institute, Toronto

    Google Scholar 

  • Rolfe G (2005) Colliding discourses: Deconstructing the process of seeking ethical approval for a participatory evaluation project. J Res Nurs 10(2):231–233

    Article  Google Scholar 

  • Salimi Y, Shahandeh K, Malekafzali H, Loori N, Kheiltash A, Jamshidi E, Frouzan AS, Majdzadeh R (2012) Is community-based participatory research (CBPR) useful? A systematic review on papers in a decade. Int J Prev Med 3(6):386

    Google Scholar 

  • Schaffer MA (2009) A virtue ethics guide to best practices for community-based participatory research. Prog Community Health Partnersh 3(1):83–90

    Article  Google Scholar 

  • Shore N (2006) Re-conceptualizing the Belmont Report: a community-based participatory research perspective. J Community Pract 14(4):5–26

    Article  Google Scholar 

  • Silva DS, Bourque J, Goering P, Hahlweg KA, Stergiopoulos V, Streiner DL, Voronka J (2014) Arriving at the end of a newly forged path: lessons from the safety and adverse events committee of the at home/ Chez Soi Project. IRB 36(5):1–7

    Google Scholar 

  • Simon C, Mosavel M (2010) Community members as recruiters of human subjects: ethical considerations. Am J Bioeth 10(3):3–11

    Article  Google Scholar 

  • Souleymanov R, Kuzmanović D, Marshall Z, Scheim AI, Mikiki M, Worthington C, Millson MP (2016) The ethics of community-based research with people who use drugs: results of a scoping review. BMC Med Ethics 17(1):25

    Article  Google Scholar 

  • Stoecker R (2003) Community-based research: from practice to theory and back again. Michigan J Commun Serv Learn 9(2). N/A

    Google Scholar 

  • Stoecker R (2012) Community-based research and the two forms of social change. J Rural Soc Sci 27(2):83

    Google Scholar 

  • Strand K, Marullo S, Cutforth NJ, Stoecker R, Donohue P (2003a) Principles of best practice for community-based research. Michigan J Commun Serv Learn 9(3):5–15

    Google Scholar 

  • Strand KJ, Cutforth N, Stoecker R, Marullo S, Donohue P (2003b) Community-based research and higher education: principles and practices. Wiley, San Francisco

    Google Scholar 

  • Strike C, Guta A, De Prinse K, Switzer S, Carusone SC (2016) Opportunities, challenges and ethical issues associated with conducting community-based participatory research in a hospital setting. Research Ethics 12(3):149–157

    Article  Google Scholar 

  • Switzer S, Guta A, de Prinse K, Carusone SC, Strike C (2015) Visualizing harm reduction: methodological and ethical considerations. Soc Sci Med 133:77–84

    Google Scholar 

  • Switzer S, Carusone SC, Guta A, Strike C (2018) A seat at the table: designing an activity-based community advisory committee with people living with HIV who use drugs. Qual Health Res https://doi.org/10.1177/1049732318812773 (e-pub ahead of print)

  • Tamariz L, Medina H, Taylor J, Carrasquillo O, Kobetz E, Palacio A (2015) Are research ethics committees prepared for community-based participatory research? J Empir Res Hum Res Ethics 10(5):488–495

    Article  Google Scholar 

  • Teti M, Murray C, Johnson L, Binson D (2012) Photovoice as a community-based participatory research method among women living with HIV/AIDS: ethical opportunities and challenges. J Empir Res Hum Res Ethics 7(4):34–43

    Article  Google Scholar 

  • Travers R, Pyne J, Bauer G, Munro L, Giambrone B, Hammond R, Scanlon K (2013) ‘Community control’ in CBPR: challenges experienced and questions raised from the Trans PULSE project. Action Res 11(4):403–422

    Article  Google Scholar 

  • Voronka J (2013) Rerouting the weeds: the move from criminalizing to pathologizing “troubled youth” in the review of the roots of youth violence. In: Le Francois B, Menzies R, Reaume G (eds) Mad matters: a critical reader in Canadian mad studies. Canadian Scholars Press, Toronto, pp 309–3222

    Google Scholar 

  • Voronka J (2016) The politics of ‘people with lived experience’ experiential authority and the risks of strategic essentialism. Philos Psychiatry Psychol 23(3):189–201

    Article  Google Scholar 

  • Voronka J (2017) Turning mad knowledge into affective labor: the case of the peer support worker. Am Q 69(2):333–338

    Article  Google Scholar 

  • Voronka J (2019a) Slow death through evidence-based research. In: Daley A, Costa L, Beresford P (eds) Madness, violence, power. University of Toronto Press, Toronto (in press)

    Google Scholar 

  • Voronka J (2019b) Storytelling beyond the psychiatric gaze: resisting resilience and recovery narratives. Can J Disabil Stud 8(2):25 p (in press)

    Google Scholar 

  • Voronka J, Wise Harris D, Grant J, Komaroff J, Boyle D, Kennedy A (2014) Un/helpful help and its discontents: peer researchers paying attention to street life narratives to inform social work policy and practice. Soc Work Mental Health 12(3):249–279

    Article  Google Scholar 

  • Wallerstein N, Duran B, Minkler M, Oetzel JG (eds) (2017) Community-based participatory research for health: advancing social and health equity. Wiley, San Francisco

    Google Scholar 

  • Wilson E, Kenny A, Dickson-Swift V (2018) Ethical challenges in community-based participatory research: a scoping review. Qual Health Res 28(2):189–199

    Article  Google Scholar 

  • Wolf LE (2010) The research ethics committee is not the enemy: oversight of community-based participatory research. J Empir Res Hum Res Ethics 5(4):77–86

    Article  Google Scholar 

  • Woolf SH, Zimmerman E, Haley A, Krist AH (2016) Authentic engagement of patients and communities can transform research, practice, and policy. Health Aff 35(4):590–594

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. School of Social Work, University of Windsor, Windsor, ON, Canada

    Adrian Guta & Jijian Voronka

Authors
  1. Adrian Guta
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Jijian Voronka
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Adrian Guta .

Editor information

Editors and Affiliations

  1. Chatelaillon Plage, France

    Ron Iphofen

Rights and permissions

Reprints and permissions

Copyright information

© 2020 Springer Nature Switzerland AG

About this entry

Check for updates. Verify currency and authenticity via CrossMark

Cite this entry

Guta, A., Voronka, J. (2020). Ethical Issues in Community-Based, Participatory, and Action-Oriented Forms of Research. In: Iphofen, R. (eds) Handbook of Research Ethics and Scientific Integrity. Springer, Cham. https://doi.org/10.1007/978-3-030-16759-2_24

Download citation

Publish with us

Policies and ethics

Search

Navigation