Recognition that structural factors influence participation decisions and have potential to coerce participation, emerged relatively recently in research ethics literature. Empirical evidence to elucidate the nature of “structural” coercion and influence is needed to optimise respect for autonomy through voluntary informed consent. We present findings from ethnographic data about community co-researchers’ experiences designing and implementing demographic and health survey consent procedures in participatory health research in Eswatini. Informed by Bourdieu's sociological theory of multiple types of capital/power, our findings detail structural influences on research participation decisions, highlight the inherently power-laden dynamics of consent interactions, and suggest that to be optimally ethical, research ethics principles and practices should consider and account for structural power dynamics.
AppiahR. (2021). Gurus and Griots: Revisiting the research informed consent process in rural African contexts. BMC Medical Ethics, 22(1), 1–11. https://doi.org/10.1186/s12910-021-00659-7
2.
BourdieuP. (1984). Distinction: A social critique of the judgement of taste (R. Nice, Trans.). Harvard University Press.
3.
BourdieuP. (1986/2011). “The forms of capital.” In I. Szeman, & T. Kapoosy (Eds), Cultural theory- ananthology (pp. 81–93). Wiley and Blackwell.
4.
BourdieuP. (1990). The logic of practice. Polity Press.
5.
BourdieuP.WacquantL. (1992). An invitation to reflexive sociology. Polity Press.
6.
BrearM. R.ShabanguP. N.HammarbergK.FisherJ. (2022). Enhancing demographic survey protocols to characterise household dynamics that influence health–a participatory approach from rural Eswatini. Global Public Health, 17(8), 1699–1712.
7.
BrearM. R.ShabanguP. N.FisherJ. R.HammarbergK.KeleherM. H.LivingstoneC. (2018). Health capability deprivations in a rural swazi community: Understanding complexity with theoretically informed, qualitatively driven, mixed-method design, participatory action research. Qualitative Health Research, 28(12), 1897–1909. https://doi.org/10.1177/1049732318768236
8.
BrearM. R.ShabanguP. N.HammarbergK.FisherJ. (2021). Ethical tensions surrounding ‘third-party disclosure’ by participants: Lessons from participatory health research in Eswatini.”Global Public Health, 1–13.https://doi.org/10.1080/17441692.2021.1983000
9.
BrearM. R.ShabanguP. N.HammarbergK.FisherJ.KeleherH. (2019). Community-based care of children affected by AIDS in Swaziland: A gender-aware analysis. Primary Health Care Research & Development20, e15. https://doi.org/10.1017/S1463423618000774
CIOMS, Council for International Organizations of Medical Sciences (2016). International ethical guidelines for health-related research involving humans. World Health Organization.
12.
DalyJ. L. (2001). Gender equality rights versus traditional practices: Struggles for control and change in Swaziland. Development Southern Africa, 18(1), 45–56. https://doi.org/10.1080/03768350120045312
El SetouhyM.AgbenyegaT.AntoF.ClerkC.KoramK.EnglishM.KumwendN. (2002). Ethics: Fair benefits for research in developing countries: Participants in the 2001 conference on ethical aspects of research in developing countries. Science (New York, N.Y.), 298(5601), 2133–2134. https://doi.org/10.1126/science.1076899
FisherJ. A. (2013). Expanding the frame of "voluntariness" in informed consent: Structural coercion and the power of social and economic context. Kennedy Institute of Ethics Journal, 23(4), 355–379. https://doi.org/10.1353/ken.2013.0018
GuilleminM.LynnG. (2004). Ethics, reflexivity, and “ethically important moments” in research. Qualitative Inquiry10(2), 261–280. https://doi.org/10.1177/1077800403262360
19.
HébertJ. R.SatarianoW. A.FriedmanD. B.ArmsteadC. A.GreinerA.FelderT. M.BraunK. L. (2015). Fulfilling ethical responsibility: Moving beyond the minimal standards of protecting human subjects from research harm. Progress in Community Health Partnerships: Research, Education, and Action, 9, 41. https://doi.org/10.1353/cpr.2015.0021
20.
HoeyerK.HogleL. F. (2014). Informed consent: The politics of intent and practice in medical research ethics. Annual Review of Anthropology, 43, 347–362. https://doi.org/0.1146/annurev-anthro-102313-030413
21.
KalabuangaM.RavinettoR.MaketaV.Muhindo MavokoH.FungulaB.Inocêncio da LuzR.LutumbaP. (2016). The challenges of research informed consent in socio–economically vulnerable populations: A viewpoint from the democratic Republic of Congo. Developing World Bioethics, 16(2), 64–69. https://doi.org/10.1111/dewb.12090
22.
LairumbiG. M.ParkerM.FitzpatrickR.EnglishM. C. (2012). Forms of benefit sharing in global health research undertaken in resource poor settings: A qualitative study of stakeholders’ views in Kenya. Philosophy, Ethics, and Humanities in Medicine, 7(1), 7. https://doi.org/10.1186/1747-5341-7-7
23.
LargentE. A.LynchH. F. (2017). Paying research participants: The outsized influence of “undue influence. IRB, 39(4), 1–9.
24.
MavundlaS. D.StrodeA.DlaminiD. C. (2020). Marital Power Finally Obliterated: The History of the Abolition of the Marital Power in Civil Marriages in Eswatini. Potchefstroom Electronic Law Journal/Potchefstroomse Elektroniese Regsblad, 23(1), 1–19. https://doi.org/10.17159/1727-3781/2020/v23i0a7504
25.
MillumJ. (2014). Consent under pressure: The puzzle of third party coercion. Ethical Theory and Moral Practice, 17(1), 113–127. https://doi.org/10.1007/s10677-013-9419-2
26.
MolyneuxS.MulupiS.MbaabuL.MarshV. (2012). Benefits and payments for research participants: Experiences and views from a research centre on the Kenyan coast. BMC Medical Ethics, 13(1), 13. https://doi.org/10.1186/1472-6939-13-13
27.
MorseJ. M., (2016). Mixed method design: Principles and procedures. Linda author Niehaus (Eds). Routledge.
NyirendaD.SariolaS.KingoriP.SquireB.BandaweC.ParkerM.DesmondN. (2020). Structural coercion in the context of community engagement in global health research conducted in a low resource setting in Africa. BMC Medical Ethics, 21(1), 1–10. https://doi.org/10.1186/s12910-020-00530-1
30.
RussellM. (1993). Women, children and marriage in Swaziland. International Journal of Sociology of the Family, 23(1), 43–57. http://www.jstor.org/stable/23028543
31.
ShabanguP. N.BrearR. M. (2017). Gendered child care norms- evidence from rural Swaziland to inform innovative prevention approaches for young women. African Journal of AIDS Research, 16(4), 345–353. https://doi.org/10.2989/16085906.2017.1387157
32.
TindanaP. O.KassN.AkweongoP. (2006). The informed consent process in a rural African setting:: A case study of the kassena-nankana district of northern Ghana. IRB, 28(3), 1–6. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099424/
33.
VenkatapuramS. (2012). Health justice: An argument from the capabilities approach. Polity Press.
34.
WongB. (2020). Public reason and structural coercion: In defense of the coercion account as the ground of public reason. Social Theory and Practice, 46(1), 231–255. https://doi.org/10.5840/soctheorpract2019123174
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
