IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v203y2018icp35-42.html
   My bibliography  Save this article

“We are the heroes because we are ready to die for this country”: Participants' decision-making and grounded ethics in an Ebola vaccine clinical trial

Author

Listed:
  • Tengbeh, Angus Fayia
  • Enria, Luisa
  • Smout, Elizabeth
  • Mooney, Thomas
  • Callaghan, Mike
  • Ishola, David
  • Leigh, Bailah
  • Watson-Jones, Deborah
  • Greenwood, Brian
  • Larson, Heidi
  • Lees, Shelley

Abstract

The 2014–2016 Ebola epidemic presented a challenging setting in which to carry out clinical trials. This paper reports findings from social science research carried out in Kambia, Northern Sierra Leone during first year of an Ebola vaccine trial (August 2015–July 2016). The social science team collected data through ethnographic observation, 42 in depth interviews; 4 life narratives; 200 exit interviews; 31 key informant interviews; and 8 focus group discussions with trial participants and community members not enrolled in the trial. Whilst research often focuses on why people refuse vaccination, we instead explore participant motivations for volunteering for the study, in spite of prevailing anxieties, rumours and mistrust during and after the Ebola outbreak. In so doing the paper contributes to on-going debates about research ethics and community engagement in resource poor contexts, offering reflections from an emergency and post-epidemic setting. We analyse participants' perceptions of the risks and benefits of participations, highlighting the importance of a contextual approach. We focus on four types of motivation: altruism; curiosity and hope; health-seeking; and notions of exchange, and argue for the role of social science in developing grounded research ethics and community engagement strategies that can take into account context and local realities.

Suggested Citation

  • Tengbeh, Angus Fayia & Enria, Luisa & Smout, Elizabeth & Mooney, Thomas & Callaghan, Mike & Ishola, David & Leigh, Bailah & Watson-Jones, Deborah & Greenwood, Brian & Larson, Heidi & Lees, Shelley, 2018. "“We are the heroes because we are ready to die for this country”: Participants' decision-making and grounded ethics in an Ebola vaccine clinical trial," Social Science & Medicine, Elsevier, vol. 203(C), pages 35-42.
    • Handle: RePEc:eee:socmed:v:203:y:2018:i:c:p:35-42
    DOI: 10.1016/j.socscimed.2018.03.008
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277953618301011
    Download Restriction: Full text for ScienceDirect subscribers only
    File URL: https://libkey.io/10.1016/j.socscimed.2018.03.008?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    1. Leach, A. & Hilton, S. & Greenwood, B. M. & Manneh, E. & Dibba, B. & Wilkins, A. & Mulholland, E. K., 1999. "An evaluation of the informed consent procedure used during a trial of a Haemophilus influenzae type B conjugate vaccine undertaken in The Gambia, West Africa," Social Science & Medicine, Elsevier, vol. 48(2), pages 139-148, January.
    2. Molyneux, Sassy & Geissler, P. Wenzel, 2008. "Ethics and the ethnography of medical research in Africa," Social Science & Medicine, Elsevier, vol. 67(5), pages 685-695, September.
    3. Fairhead, James & Leach, Melissa & Small, Mary, 2006. "Where techno-science meets poverty: Medical research and the economy of blood in The Gambia, West Africa," Social Science & Medicine, Elsevier, vol. 63(4), pages 1109-1120, August.
    4. Charles Gore & Melissa Leach, 2015. "The Ebola Crisis and Post‐2015 Development," Journal of International Development, John Wiley & Sons, Ltd., vol. 27(6), pages 816-834, August.
    5. P. W. Geissler, 2011. "Transport To Where?," Journal of Cultural Economy, Taylor & Francis Journals, vol. 4(1), pages 45-64, February.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. James, Myfanwy & Kasereka, Joseph Grace & Kasiwa, Benjamin & Kavunga-Membo, Hugo & Kambale, Kasonia & Grais, Rebecca & Muyembe-Tamfum, Jean-Jacques & Bausch, Daniel G. & Watson-Jones, Deborah & Lees, , 2023. "Protection, health seeking, or a laissez-passer: Participants’ decision-making in an EVD vaccine trial in the eastern Democratic Republic of the Congo," Social Science & Medicine, Elsevier, vol. 323(C).
    2. Leach, Melissa & MacGregor, Hayley & Akello, Grace & Babawo, Lawrence & Baluku, Moses & Desclaux, Alice & Grant, Catherine & Kamara, Foday & Nyakoi, Marion & Parker, Melissa & Richards, Paul & Mokuwa,, 2022. "Vaccine anxieties, vaccine preparedness: Perspectives from Africa in a Covid-19 era," Social Science & Medicine, Elsevier, vol. 298(C).

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. James, Myfanwy & Kasereka, Joseph Grace & Kasiwa, Benjamin & Kavunga-Membo, Hugo & Kambale, Kasonia & Grais, Rebecca & Muyembe-Tamfum, Jean-Jacques & Bausch, Daniel G. & Watson-Jones, Deborah & Lees, , 2023. "Protection, health seeking, or a laissez-passer: Participants’ decision-making in an EVD vaccine trial in the eastern Democratic Republic of the Congo," Social Science & Medicine, Elsevier, vol. 323(C).
    2. Reynolds, Lindsey & Cousins, Thomas & Newell, Marie-Louise & Imrie, John, 2013. "The social dynamics of consent and refusal in HIV surveillance in rural South Africa," Social Science & Medicine, Elsevier, vol. 77(C), pages 118-125.
    3. Sariola, Salla & Simpson, Bob, 2011. "Theorising the 'human subject' in biomedical research: International clinical trials and bioethics discourses in contemporary Sri Lanka," Social Science & Medicine, Elsevier, vol. 73(4), pages 515-521, August.
    4. Kelly, Ann H. & Ameh, David & Majambere, Silas & Lindsay, Steve & Pinder, Margaret, 2010. "'Like sugar and honey': The embedded ethics of a larval control project in The Gambia," Social Science & Medicine, Elsevier, vol. 70(12), pages 1912-1919, June.
    5. Hutchinson, Eleanor & Nayiga, Susan & Nabirye, Christine & Taaka, Lilian & Staedke, Sarah G., 2018. "Data value and care value in the practice of health systems: A case study in Uganda," Social Science & Medicine, Elsevier, vol. 211(C), pages 123-130.
    6. Rory Horner, 2017. "What is global development," Global Development Institute Working Paper Series 202017, GDI, The University of Manchester.
    7. Heimer, Carol A., 2013. "‘Wicked’ ethics: Compliance work and the practice of ethics in HIV research," Social Science & Medicine, Elsevier, vol. 98(C), pages 371-378.
    8. Lorway, Robert & Khan, Shamshad, 2014. "Reassembling epidemiology: Mapping, monitoring and making-up people in the context of HIV prevention in India," Social Science & Medicine, Elsevier, vol. 112(C), pages 51-62.
    9. True, Gala & Alexander, Leslie B. & Fisher, Celia B., 2017. "Supporting the role of community members employed as research staff: Perspectives of community researchers working in addiction research," Social Science & Medicine, Elsevier, vol. 187(C), pages 67-75.
    10. Barata, Paula C. & Gucciardi, Enza & Ahmad, Farah & Stewart, Donna E., 2006. "Cross-cultural perspectives on research participation and informed consent," Social Science & Medicine, Elsevier, vol. 62(2), pages 479-490, January.
    11. de Vries, Jantina & Jallow, Muminatou & Williams, Thomas N. & Kwiatkowski, Dominic & Parker, Michael & Fitzpatrick, Raymond, 2012. "Investigating the potential for ethnic group harm in collaborative genomics research in Africa: Is ethnic stigmatisation likely?," Social Science & Medicine, Elsevier, vol. 75(8), pages 1400-1407.
    12. Leach, Melissa & MacGregor, Hayley & Scoones, Ian & Wilkinson, Annie, 2021. "Post-pandemic transformations: How and why COVID-19 requires us to rethink development," World Development, Elsevier, vol. 138(C).
    13. Sheikh, Zainab Afshan & Jensen, Anja M.B., 2019. "Channeling hope: An ethnographic study of how research encounters become meaningful for families suffering from genetic disease in Pakistan," Social Science & Medicine, Elsevier, vol. 228(C), pages 103-110.
    14. Schumaker, Lynette Louise & Bond, Virginia A., 2008. "Antiretroviral therapy in Zambia: Colours, 'spoiling', 'talk' and the meaning of antiretrovirals," Social Science & Medicine, Elsevier, vol. 67(12), pages 2126-2134, December.
    15. Gouda, H.N. & Kelly-Hanku, A. & Wilson, L. & Maraga, S. & Riley, I.D., 2016. "“Whenever they cry, I cry with them”: Reciprocal relationships and the role of ethics in a verbal autopsy study in Papua New Guinea," Social Science & Medicine, Elsevier, vol. 163(C), pages 1-9.
    16. Cliggett, Lisa & Crooks, Deborah L., 2007. "Promoting Multi-methods Research: Linking Anthropometric Methods to Migration Studies," Migration Letters, Migration Letters, vol. 4(2), pages 159-169, October.
    17. Geissler, P. Wenzel & Kelly, Ann & Imoukhuede, Babatunde & Pool, Robert, 2008. "'He is now like a brother, I can even give him some blood' - Relational ethics and material exchanges in a malaria vaccine 'trial community' in The Gambia," Social Science & Medicine, Elsevier, vol. 67(5), pages 696-707, September.
    18. Lawrence, David S. & Ssali, Agnes & Moshashane, Neo & Nabaggala, Georgina & Maphane, Lebogang & Harrison, Thomas S. & Meya, David B. & Jarvis, Joseph N. & Seeley, Janet, 2022. "Decision making in a clinical trial for a life-threatening illness: Therapeutic expectation, not misconception," Social Science & Medicine, Elsevier, vol. 305(C).
    19. Chiumento, Anna & Rahman, Atif & Frith, Lucy, 2020. "Writing to template: Researchers’ negotiation of procedural research ethics," Social Science & Medicine, Elsevier, vol. 255(C).
    20. Watson, Sharon, 2022. "‘Don't cross the line, you're a researcher and not an educator’: Incorporating indigenous researchers' moral perspectives to improve ethical protocols in health research," Social Science & Medicine, Elsevier, vol. 315(C).

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:eee:socmed:v:203:y:2018:i:c:p:35-42. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Catherine Liu (email available below). General contact details of provider: http://www.elsevier.com/wps/find/journaldescription.cws_home/315/description#description .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.