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‘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

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  • Watson, Sharon

Abstract

Given that researchers from North America and Europe author most global scientific publications, indigenous frontline researcher perspectives are rarely incorporated in the general research enterprise and ethics. Addressing this shortcoming, we analyzed a subset of data from a larger study. We present results from semi-structured in-depth ethnographic interviews with nine indigenous research assistants (RAs) conducted in Southern Africa four years after implementing a national HIV/AIDS study collaboratively implemented by national, U.S., and European-based stakeholders. The aim is to elucidate how these frontline researchers understand and interpret the task of maintaining their role as researchers and when they felt it more appropriate to cross to prevention educator or interventionist. The obtained results demonstrate how practices intended to protect participants and produce minimally biased ethical data create a conflict for frontline researchers by pitting operational ethics against their humanity. RAs understood and accepted the standard study procedures and the need to maintain their role as researchers. Nevertheless, a majority chose to provide unsolicited information or advice to participants despite the risk of potentially losing their job or causing harm to participants. RAs justified their decision to intervene by the lack and questionable quality of local resources/referrals and the long turnaround from data collection to prevention programming. This article demonstrates how practical exigencies in fulfilling IRB/ethics oversight and designing studies that produce the expected standard of evidence to influence policy and programmatic decisions inadvertently stifle opportunities to translate research into action. We offer specific points of reflection for researchers trained in High Income Country (HIC) perspectives towards decolonizing and improving practices in designing ethical research and establishing reflexive work environments with indigenous researchers.

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  • 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).
  • Handle: RePEc:eee:socmed:v:315:y:2022:i:c:s0277953622008097
    DOI: 10.1016/j.socscimed.2022.115503
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    References listed on IDEAS

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    1. Nchinda, Thomas C., 2002. "Research capacity strengthening in the South," Social Science & Medicine, Elsevier, vol. 54(11), pages 1699-1711, June.
    2. Nguyen, Megan & Goldsamt, Lloyd & Mazibuko, Nonhlanhla & Zondo, Sanelisiwe & Fielding-Miller, Rebecca, 2021. "Emotional distress among frontline research staff," Social Science & Medicine, Elsevier, vol. 281(C).
    3. Maina-Ahlberg, Beth & Nordberg, Erik & Tomson, Göran, 1997. "North-South health research collaboration: Challenges in institutional interaction," Social Science & Medicine, Elsevier, vol. 44(8), pages 1229-1238, April.
    4. Esser, Daniel E. & Keating Bench, Kara, 2011. "Does Global Health Funding Respond to Recipients' Needs? Comparing Public and Private Donors' Allocations in 2005-2007," World Development, Elsevier, vol. 39(8), pages 1271-1280, August.
    5. Kingori, Patricia, 2013. "Experiencing everyday ethics in context: Frontline data collectors perspectives and practices of bioethics," Social Science & Medicine, Elsevier, vol. 98(C), pages 361-370.
    6. 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.
    7. Hoeyer, Klaus & Dahlager, Lisa & Lynöe, Niels, 2005. "Conflicting notions of research ethics: The mutually challenging traditions of social scientists and medical researchers," Social Science & Medicine, Elsevier, vol. 61(8), pages 1741-1749, October.
    8. Wight, Daniel & Ahikire, Josephine & Kwesiga, Joy C., 2014. "Consultancy research as a barrier to strengthening social science research capacity in Uganda," Social Science & Medicine, Elsevier, vol. 116(C), pages 32-40.
    9. Charles Weijer & Jeremy M Grimshaw & Martin P Eccles & Andrew D McRae & Angela White & Jamie C Brehaut & Monica Taljaard & Ottawa Ethics of Cluster Randomized Trials Consensus Group, 2012. "The Ottawa Statement on the Ethical Design and Conduct of Cluster Randomized Trials," PLOS Medicine, Public Library of Science, vol. 9(11), pages 1-9, November.
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