Institutional review boards (IRBs) set ethical standards for research conduct, thereby contributing to a coherent framework for responsible research practice. However, their current focus on risk reduction has proven to be challenging for many researchers working in co-creative research where participants become co-researchers and play an active role in shaping, challenging, or controlling the research process. In this article, we identify challenges that risk-averse ethics pose for co-creative research. In response to these challenges, we illustrate how co-creative practices provide “workarounds” to ill-fitted, risk-averse-focused IRB questions received while remaining sensitive to the specific ethical concerns of co-creative research. We suggest ethical principles for co-creative research that are grounded in opportunity-based ethics, inspired by feminist new materialisms and critical theory. Instead of predetermining harms and instigating precaution, we argue for an ethics in co-creative research that recognizes ethical risks and opportunities as collaboratively emergent.
AnthoniE.BalwaniK.SchoffelenJ.HannesK. (2021). 20:30 Bruxsels talks: Fiction as a method, fiction as a format, fiction as a space for participation. Art/Research International: A Transdisciplinary Journal, 6(1), 56–83. https://doi.org/10.18432/ari29553
BaradK. (2003). Posthumanist performativity: Toward an understanding of how matter comes to matter. Signs: Journal of Women in Culture and Society, 28(3), 801–831. https://doi.org/10.1086/345321
4.
BaradK. (2007). Meeting the universe halfway: Quantum physics and the entanglement of matter and meaning. Duke University Press.
BeckU. (1998). Risk society: Towards a new modernity (6th ed.). Sage.
7.
BoundasC. V. (Ed.). (2006). Deleuze and philosophy. Edinburgh University Press.
8.
BozalekV.BraidottiR.ZembylasM.SheferT. (Eds.). (2018). Socially just pedagogies in higher education: Critical posthumanist and new feminist materialist perspectives. Bloomsbury.
9.
BraidottiR. (2013). The posthuman. Polity Press.
10.
BuckleJ. L.DwyerS. C.JacksonM. (2010). Qualitative bereavement research: Incongruity between the perspectives of participants and research ethics boards. International Journal of Social Research Methodology, 13(2), 111–125. https://doi.org/10.1080/13645570902767918
11.
CarozziG.HornerL. K. (2023). Onto-epistemicide and the research ethics board: Toward a reflexive ethics. Qualitative Inquiry, 31, 45–57. https://doi.org/10.1177/10778004231209064
12.
Carroll-LindJ.ChapmanaJ. W.GregoryJ.MaxwellG. (2006). The key to the gatekeepers: Passive consent and other ethical issues surrounding the rights of children to speak on issues that concern them. Child Abuse & Neglect, 30, 979–989. https://doi.org/10.1016/j.chiabu.2005.11.013
13.
Centre for Social Justice and Community Action. (2022). Community-based participatory research: A guide to ethical principles and practices (2nd ed.). Durham University.
14.
CheloucheT.WyniaM. K.KuczewskiM. G.BlairA.KluchinR.SilversW. S.LevineM. A.HimberM.BakerR.SirkinS.HamptonK.MishoriR.SchweikartS. J.ChaetD. H.JuengstE. T.CaplanA. L.SternA. M.LentinoM. (2021). Legacies of the holocaust in health care. AMA Journal of Ethics, 23(1), E1–81. http://doi.org/10.1001/amajethics.2021.78
15.
ClarkeA. E.MamoL.FishmanJ. R.ShimJ. K.FosketJ. R. (2003). Biomedicalization: Technoscientific transformations of health, illness, and US biomedicine. American Sociological Review, 68, 161–194.
16.
CoemansS.VandenabeeleJ.HannesK. (2022). Magnificent rubbish: An arts-informed research project as a form of response-able pedagogy. Journal of Social Intervention: Theory and Practice, 31(1), 1–19. http://doi.org/10.18352/jsi.683
17.
DeleuzeG. (1988). Spinoza: Practical philosophy (HurleyR., Trans.). San Francisco, CA: City Lights Books.
18.
DeleuzeG.GuattariF. (2012). A thousand plateaus: Capitalism and schizophrenia. London, England: Continuum.
19.
DierckxC.HendricksL.CoemansS.HannesK. (2021). The third sphere: Reconceptualising allyship in community-based participatory research praxis. Qualitative Research in Psychology, 18(4), 473–497. https://doi.org/10.1080/14780887.2020.1854402
20.
DonaldD. (2012). Forts, curriculum, and indigenous metissage: Imagining decolonization of aboriginal-Canadian relations in educational contexts. First Nations Perspectives, 2(1), 1–24. https://api.semanticscholar.org/CorpusID:147387799
21.
DroletM.-J.Rose-DerouinE.LeblancJ.-C.RuestM.Williams-JonesB. (2023). Ethical issues in research: Perceptions of researchers, research ethics board members and research ethics experts. Journal of Academic Ethics, 21, 269–292. https://doi.org/10.1007/s10805-022-09455-3
22.
Fernandez-BouA. S.Ortiz-PartidaJ. P.DobbinK. B.Flores-LanderosH.BernacchiL. A.Medellín-AzuaraJ. (2021). Underrepresented, understudied, underserved: Gaps and opportunities for advancing justice in disadvantaged communities. Environmental Science & Policy, 122, 92–100. https://doi.org/10.1016/j.envsci.2021.04.014
23.
GaleK. (2018). Madness as methodology: Bringing concepts to life in contemporary theorizing and inquiry. Routledge.
24.
GiddensA. (1990). The consequences of modernity. Stanford University Press.
25.
GiddensA. (1991). Modernity and self-identity in the late modern age. Polity Press.
HarawayD. J. (1988). Situated knowledges: The science question in feminism and the privilege of partial perspective. Feminist Studies, 14(3), 575–599. https://doi.org/10.2307/3178066
28.
HarawayD. J. (2016). Staying with the trouble: Making Kin in the Chthulucene. Duke University Press.
29.
Harmes-LiedtkeU.GianettiS. (2019). The concept of co-creation and related methodologies for generating urban innovations bibliographic systematization. Deutsche Gesellschaft für Internationale Zusammenarbeit—German Cooperation for Sustainable Development in Mexico (GIS). https://doi.org/10.13140/RG.2.2.27106.89283
30.
HoelA. W.KayssiA.BrahmanandamS.BelkinM.ConteM. S.NguyenL. L. (2009). Under-representation of women and ethnic minorities in vascular surgery randomized controlled trials. Journal of Vascular Surgery, 50(2), 349–354. https://doi.org/10.1016/j.jvs.2009.01.012
31.
HofmanL. B. (2023). Immanent obligations of response: Articulating everyday response-abilities through care. Distinktion: Journal of Social Theory. Advance online publication. https://doi.org/10.1080/1600910X.2023.2222339
IdreesS. S.HannesK.de AndradeM. (2024). Seeking refuge in South Africa: Navigating power, healing, and co-creation in body-mapping processes. Social Inclusion, 12, Article 9013. https://doi.org/10.17645/si.9013
JohanssonL.HallJ. B. (2019). Research ethics of becoming: Approaches beyond moral laws. International Review of Qualitative Research, 12(4), 413–432. https://doi.org/10.1525/irqr.2019.12.4.413
36.
KamlongeraM. I.Katenga-KaundaM. W. (2023). Researchers’ reflections on ethics of care as decolonial research practice: Understanding Indigenous knowledge communication systems to navigate moments of ethical tension in rural Malawi. Research Ethics, 19(3), 312–324. https://doi.org/10.1177/17470161231169484
37.
LenetteC. (2021). Health on the move: Walking interviews in health and wellbeing research. In LuptonD.LeahyD. (Eds.), Creative approaches to health education: New ways of thinking, making, doing, teaching and learning (pp. 136–159). Routledge.
38.
MoriñaA. (2021). When people matter: The ethics of qualitative research in the health and social sciences. Health and Social Care in the Community, 29(5), 1559–1565. https://doi.org/10.1111/hsc.13221
39.
NealM. (2000). Risk aversion: The rise of an ideology. In JonesL. (Ed.), Safe enough: Managing risk and regulation (pp. 13–31). The Fraser Institute.
40.
OlofssonA.ZinnJ.GriffinG.NygrenK.CebullaA.Hannah-MoffatK. (2014). The mutual constitution of risk and inequalities: Intersectional risk theory. Health Risk and Society, 16(5), 417–430. http://dx.doi.org/10.1080/13698575.2014.942258
41.
ParkerM.PearsonC.DonaldC.FisherC. B. (2019). Beyond the Belmont principles: A community-based approach to developing an indigenous ethics model and curriculum for training health researchers working with American Indian and Alaska native communities. American Journal Community Psychology, 64(1–2), 9–20. https://doi.org/10.1002/ajcp.12360
42.
PerryK. H. (2019). Anonymity, vulnerability and informed consent: An ethical-methodological tale. In BigelowM.WarrinerD. S. (Eds.), Critical reflections on research methods: Power and equity in complex multilingual contexts (pp. 157–170): Multilingual Matters.
43.
Puig de la BellacasaM. (2017). Matters of care: Speculative ethics in more than human worlds. Minnesota University Press.
44.
RaykovM.VellaR. (2021). Ethics reviews in socially engaged arts research. Research in Arts & Education, 3, 29–49. https://doi.org/10.54916/rae.119543
45.
SantosB. D. S.MenesesM. (Eds.) (2019). Knowledges born in the struggle: Constructing the epistemologies of the Global South. Routledge.
46.
ShawS.BarrettG. (2006). Research governance: Regulating risk and reducing harm?Journal of the Royal Society of Medicine, 99, 14–19. https://doi.org/10.1177/014107680609900109
47.
SimsJ. P.NolenC. (2021). “I wouldn’t trust the parents to “do no harm” to a queer kid”: Rethinking parental permission requirements for youth participation in social science research. Journal of Empirical Research on Human Research Ethics, 16(1–2), 35–45. http://dx.doi.org/10.1177/1556264620983134
48.
StoutenE. (2023). Opening up the curtains: A reflexive process perspective on a youth participatory action research in Genk between October 2021 and May 2023 [Master’s Thesis]. KU Leuven.
49.
TaylorC. A. (2018). Each intra-action matters: Towards a posthuman ethics for enlarging response-ability in higher education pedagogic practice-ings. In ZemblyasM. (Ed.), Socially just pedagogies: Posthumanist, feminist and materialist perspectives in higher education (pp. 81–96). Bloomsbury Publishing. https://doi.org/10.5040/9781350032910.ch-005
50.
TeixeiraS.AugsbergerA.Richards-SchusterK.MartinezL. S. (2021). Participatory research approaches with youth: Ethics, engagement, and meaningful action. American Journal of Community Psychology, 68, 142–153. https://doi.org/10.1002/ajcp.12501
51.
The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1975). The Belmont report ethical principles and guidelines for the protection of human subjects of research. U.S. Government Printing Office.
52.
ToddZ. (2016). An indigenous feminist’s take on the ontological turn: “Ontology” is just another word for colonialism. Journal of Historical Sociology, 29(1), 4–22. http://dx.doi.org/10.1111/johs.12124
53.
TrumanS. (2019). Feminist new materialisms. In AtkinsonP. A.DelamontS.HardyM. A.WillimasM. (Eds.), The SAGE encyclopedia of research methods (pp. 1–11). Sage. http://dx.doi.org/10.4135/9781526421036
54.
Van PraagL (Ed.). (2021). Co-creation in migration studies: The use of co-creative methods to study migrant integration across European Societies. Leuven University Press. https://doi.org/10.2307/j.ctv1qhstr1
55.
VermeylenS.ClarkG. (2017). An alternative ethics for research: Levinas and the unheard voices and unseen faces. International Journal of Social Research Methodology, 20(5), 499–512. https://doi.org/10.1080/13645579.2016.1220117
56.
WattsV. (2013). Indigenous place-thought & agency amongst humans and non-humans (First Woman and Sky Woman go on a European world tour!). Decolonization: Indigeneity, Education & Society, 2(1), 20–34. https://jps.library.utoronto.ca/index.php/des/article/view/19145
WynterS. (2003). Unsettling the coloniality of being/power/truth/freedom: Towards the human, after man, its overrepresentation—An argument. Michigan State University Press.
