The willingness to participate in biomedical research involving human beings in low- and middle-income countries: a systematic review.

Joyce L Browne,Irene Agyepong,Diederick E Grobbee,Ama Edwin,Kerstin Klipstein‐Grobusch,Connie O Rees,Johannes J M Van Delden,Rieke Van Der Graaf

doi:10.1111/tmi.13195

Abstract

ObjectivesTo systematically review reasons for the willingness to participate in biomedical human subjects research in low‐ and middle‐income countries (LMICs).MethodsFive databases were systematically searched for articles published between 2000 and 2017 containing the domain of ‘human subjects research’ in ‘LMICs’ and determinant ‘reasons for (non)participation’. Reasons mentioned were extracted, ranked and results narratively described.ResultsNinety‐four articles were included, 44 qualitative and 50 mixed‐methods studies. Altruism, personal health benefits, access to health care, monetary benefit, knowledge, social support and trust were the most important reasons for participation. Primary reasons for non‐participation were safety concerns, inconvenience, stigmatisation, lack of social support, confidentiality concerns, physical pain, efficacy concerns and distrust. Stigmatisation was a major concern in relation to HIV research. Reasons were similar across different regions, gender, non‐patient or patient participants and real or hypothetical study designs.ConclusionsAddressing factors that affect (non‐)participation in the planning process and during the conduct of research may enhance voluntary consent to participation and reduce barriers for potential participants.

Highlights

Ample studies have addressed the willingness of human subjects to participate in biomedical research
Articles were eligible for inclusion in this systematic review if they related to the domain of biomedical research involving human beings in low- and middle-income countries (LMICs) and addressed ‘reasons to participate’ [16]
This systematic review shows that the most important reasons for willingness to participate in research or not are common across LMICs in different regions, for both HIV and non-HIV research, for men and women and for non-patient and patient participants

Summary

Introduction

Ample studies have addressed the willingness of human subjects to participate in biomedical research. Others looked into practical aspects in an attempt to understand barriers for research participation and improve recruitment and retention rates [1,2,3,4]. Studies on the willingness to participate include research in specific populations such as pregnant women or children with cancer, ethnic minorities, and in varying contexts in high as well as low- and middle-income countries (LMICs) [2, 5,6,7,8,9]. Systematic reviews on willingness to participate are rare [7, 10], and do not exist for research participation in LMICs . These reviews are highly relevant for research conducted in LMICs since social determinants such as poverty, limited health care access, illiteracy and linguistic or cultural aspects may

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