The challenges and opportunities of informed consent in LMIC

Clara Calia, Sena, N. Yucelli, Mark Hoelterhoff, Action Amos, Khama Chibwana, Paul Kawale, Susannah Johnston, Ruth Magowan, Emily Taylor, Corinne Reid

Research output: Contribution to conferenceAbstractpeer-review

Abstract / Description of output

The importance of informed consent is central to ethical research practice. Gaining informed consent with vulnerable populations in vulnerable contexts, such as low and middle-income countries (LMIC) presents unique challenges for researchers. Unfamiliarity with the idea of research presents a special challenge as does understanding the difference between participation in a research project and, for example, an aid or development project. Securing the trust of leaders in the community is a prerequisite for continuing research (Tindana, et al. 2006); but in some communities, the concept of individual consent can be usurped by the authority of local and community leaders (Krogstad, et al. 2010) highlighting power differentials that make the concept of informed consent particularly fragile. Conversely, some individuals have impairments that may compromise their ability to fully or independently understand the intention or the methodology of a project, despite being potentially directly impacted by it. It may be unethical not to fully inform those directly affected and it may also be unethical to deny this possible benefit to those with impaired decisional capacity (FEDOMA, 2018). Additionally, issues such as language, health, culture, educational factors and economic factors can make the comprehensibility of traditional informed consent procedures very difficult (Jegede, 2009). These challenges provide the impetus to explore alternative conceptualisations of informed consent, and innovative methods of obtaining consent. Past research demonstrates attempts to counteract low-literacy with methods such as verbal consent or finger printing (Marshall, 2006). However, even these attempts have significant limitations in addressing the ‘informed’ aspect of consent. Consenting should also be inclusive despite circumstances. What is needed is an approach that will not only overcome the previously identified challenges but will also provide a culturally responsive method of seeking informed consent. This study aims to explore the use of audio-visual media as a platform for creating circumstances in which informed consent can be more authentically obtained. A Malawian case study of an innovative approach to consent will be presented, in which participants' understanding and knowledge retention of consent and research processes will be assessed, as well as participant preferences.

Original languageEnglish
Publication statusAccepted/In press - 17 Oct 2018
Event3rd European Congress of Qualitative Inquiry - Edinburgh, United Kingdom
Duration: 13 Feb 201915 Feb 2019


Conference3rd European Congress of Qualitative Inquiry
Abbreviated titleECQI 2019
Country/TerritoryUnited Kingdom
Internet address

Keywords / Materials (for Non-textual outputs)

  • LMIC
  • informed consent


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